how to write findings qualitative research

How To Write The Results/Findings Chapter

For qualitative studies (dissertations & theses).

By: Jenna Crossley (PhD Cand). Expert Reviewed By: Dr. Eunice Rautenbach | August 2021

So, you’ve collected and analysed your qualitative data, and it’s time to write up your results chapter – exciting! But where do you start? In this post, we’ll guide you through the qualitative results chapter (also called the findings chapter), step by step.  

Overview: Qualitative Results Chapter

• What (exactly) the qualitative results chapter is
• What to include in your results chapter
• How to write up your results chapter
• A few tips and tricks to help you along the way

What exactly is the results chapter?

The results chapter in a dissertation or thesis (or any formal academic research piece) is where you objectively and neutrally present the findings of your qualitative analysis (or analyses if you used multiple qualitative analysis methods ). This chapter can sometimes be combined with the discussion chapter (where you interpret the data and discuss its meaning), depending on your university’s preference.  We’ll treat the two chapters as separate, as that’s the most common approach.

In contrast to a quantitative results chapter that presents numbers and statistics, a qualitative results chapter presents data primarily in the form of words . But this doesn’t mean that a qualitative study can’t have quantitative elements – you could, for example, present the number of times a theme or topic pops up in your data, depending on the analysis method(s) you adopt.

Adding a quantitative element to your study can add some rigour, which strengthens your results by providing more evidence for your claims. This is particularly common when using qualitative content analysis. Keep in mind though that qualitative research aims to achieve depth, richness and identify nuances , so don’t get tunnel vision by focusing on the numbers. They’re just cream on top in a qualitative analysis.

So, to recap, the results chapter is where you objectively present the findings of your analysis, without interpreting them (you’ll save that for the discussion chapter). With that out the way, let’s take a look at what you should include in your results chapter.

What should you include in the results chapter?

As we’ve mentioned, your qualitative results chapter should purely present and describe your results , not interpret them in relation to the existing literature or your research questions . Any speculations or discussion about the implications of your findings should be reserved for your discussion chapter.

In your results chapter, you’ll want to talk about your analysis findings and whether or not they support your hypotheses (if you have any). Naturally, the exact contents of your results chapter will depend on which qualitative analysis method (or methods) you use. For example, if you were to use thematic analysis, you’d detail the themes identified in your analysis, using extracts from the transcripts or text to support your claims.

While you do need to present your analysis findings in some detail, you should avoid dumping large amounts of raw data in this chapter. Instead, focus on presenting the key findings and using a handful of select quotes or text extracts to support each finding . The reams of data and analysis can be relegated to your appendices.

While it’s tempting to include every last detail you found in your qualitative analysis, it is important to make sure that you report only that which is relevant to your research aims, objectives and research questions .  Always keep these three components, as well as your hypotheses (if you have any) front of mind when writing the chapter and use them as a filter to decide what’s relevant and what’s not.

Need a helping hand?

How do I write the results chapter?

Now that we’ve covered the basics, it’s time to look at how to structure your chapter. Broadly speaking, the results chapter needs to contain three core components – the introduction, the body and the concluding summary. Let’s take a look at each of these.

Section 1: Introduction

The first step is to craft a brief introduction to the chapter. This intro is vital as it provides some context for your findings. In your introduction, you should begin by reiterating your problem statement and research questions and highlight the purpose of your research . Make sure that you spell this out for the reader so that the rest of your chapter is well contextualised.

The next step is to briefly outline the structure of your results chapter. In other words, explain what’s included in the chapter and what the reader can expect. In the results chapter, you want to tell a story that is coherent, flows logically, and is easy to follow , so make sure that you plan your structure out well and convey that structure (at a high level), so that your reader is well oriented.

The introduction section shouldn’t be lengthy. Two or three short paragraphs should be more than adequate. It is merely an introduction and overview, not a summary of the chapter.

Pro Tip – To help you structure your chapter, it can be useful to set up an initial draft with (sub)section headings so that you’re able to easily (re)arrange parts of your chapter. This will also help your reader to follow your results and give your chapter some coherence.  Be sure to use level-based heading styles (e.g. Heading 1, 2, 3 styles) to help the reader differentiate between levels visually. You can find these options in Word (example below).

Section 2: Body

Before we get started on what to include in the body of your chapter, it’s vital to remember that a results section should be completely objective and descriptive, not interpretive . So, be careful not to use words such as, “suggests” or “implies”, as these usually accompany some form of interpretation – that’s reserved for your discussion chapter.

The structure of your body section is very important , so make sure that you plan it out well. When planning out your qualitative results chapter, create sections and subsections so that you can maintain the flow of the story you’re trying to tell. Be sure to systematically and consistently describe each portion of results. Try to adopt a standardised structure for each portion so that you achieve a high level of consistency throughout the chapter.

For qualitative studies, results chapters tend to be structured according to themes , which makes it easier for readers to follow. However, keep in mind that not all results chapters have to be structured in this manner. For example, if you’re conducting a longitudinal study, you may want to structure your chapter chronologically. Similarly, you might structure this chapter based on your theoretical framework . The exact structure of your chapter will depend on the nature of your study , especially your research questions.

As you work through the body of your chapter, make sure that you use quotes to substantiate every one of your claims . You can present these quotes in italics to differentiate them from your own words. A general rule of thumb is to use at least two pieces of evidence per claim, and these should be linked directly to your data. Also, remember that you need to include all relevant results , not just the ones that support your assumptions or initial leanings.

In addition to including quotes, you can also link your claims to the data by using appendices , which you should reference throughout your text. When you reference, make sure that you include both the name/number of the appendix , as well as the line(s) from which you drew your data.

As referencing styles can vary greatly, be sure to look up the appendix referencing conventions of your university’s prescribed style (e.g. APA , Harvard, etc) and keep this consistent throughout your chapter.

Section 3: Concluding summary

The concluding summary is very important because it summarises your key findings and lays the foundation for the discussion chapter . Keep in mind that some readers may skip directly to this section (from the introduction section), so make sure that it can be read and understood well in isolation.

In this section, you need to remind the reader of the key findings. That is, the results that directly relate to your research questions and that you will build upon in your discussion chapter. Remember, your reader has digested a lot of information in this chapter, so you need to use this section to remind them of the most important takeaways.

Importantly, the concluding summary should not present any new information and should only describe what you’ve already presented in your chapter. Keep it concise – you’re not summarising the whole chapter, just the essentials.

Tips and tricks for an A-grade results chapter

Now that you’ve got a clear picture of what the qualitative results chapter is all about, here are some quick tips and reminders to help you craft a high-quality chapter:

• Your results chapter should be written in the past tense . You’ve done the work already, so you want to tell the reader what you found , not what you are currently finding .
• Make sure that you review your work multiple times and check that every claim is adequately backed up by evidence . Aim for at least two examples per claim, and make use of an appendix to reference these.
• When writing up your results, make sure that you stick to only what is relevant . Don’t waste time on data that are not relevant to your research objectives and research questions.
• Use headings and subheadings to create an intuitive, easy to follow piece of writing. Make use of Microsoft Word’s “heading styles” and be sure to use them consistently.
• When referring to numerical data, tables and figures can provide a useful visual aid. When using these, make sure that they can be read and understood independent of your body text (i.e. that they can stand-alone). To this end, use clear, concise labels for each of your tables or figures and make use of colours to code indicate differences or hierarchy.
• Similarly, when you’re writing up your chapter, it can be useful to highlight topics and themes in different colours . This can help you to differentiate between your data if you get a bit overwhelmed and will also help you to ensure that your results flow logically and coherently.

If you have any questions, leave a comment below and we’ll do our best to help. If you’d like 1-on-1 help with your results chapter (or any chapter of your dissertation or thesis), check out our private dissertation coaching service here or book a free initial consultation to discuss how we can help you.

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20 Comments

This was extremely helpful. Thanks a lot guys

Hi, thanks for the great research support platform created by the gradcoach team!

I wanted to ask- While “suggests” or “implies” are interpretive terms, what terms could we use for the results chapter? Could you share some examples of descriptive terms?

I think that instead of saying, ‘The data suggested, or The data implied,’ you can say, ‘The Data showed or revealed, or illustrated or outlined’…If interview data, you may say Jane Doe illuminated or elaborated, or Jane Doe described… or Jane Doe expressed or stated.

I found this article very useful. Thank you very much for the outstanding work you are doing.

What if i have 3 different interviewees answering the same interview questions? Should i then present the results in form of the table with the division on the 3 perspectives or rather give a results in form of the text and highlight who said what?

I think this tabular representation of results is a great idea. I am doing it too along with the text. Thanks

That was helpful was struggling to separate the discussion from the findings

this was very useful, Thank you.

Very helpful, I am confident to write my results chapter now.

It is so helpful! It is a good job. Thank you very much!

Very useful, well explained. Many thanks.

Hello, I appreciate the way you provided a supportive comments about qualitative results presenting tips

I loved this! It explains everything needed, and it has helped me better organize my thoughts. What words should I not use while writing my results section, other than subjective ones.

Thanks a lot, it is really helpful

Thank you so much dear, i really appropriate your nice explanations about this.

Thank you so much for this! I was wondering if anyone could help with how to prproperly integrate quotations (Excerpts) from interviews in the finding chapter in a qualitative research. Please GradCoach, address this issue and provide examples.

what if I’m not doing any interviews myself and all the information is coming from case studies that have already done the research.

Very helpful thank you.

This was very helpful as I was wondering how to structure this part of my dissertation, to include the quotes… Thanks for this explanation

This is very helpful, thanks! I am required to write up my results chapters with the discussion in each of them – any tips and tricks for this strategy?

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Qualitative Data Analysis

23 Presenting the Results of Qualitative Analysis

Mikaila Mariel Lemonik Arthur

Qualitative research is not finished just because you have determined the main findings or conclusions of your study. Indeed, disseminating the results is an essential part of the research process. By sharing your results with others, whether in written form as scholarly paper or an applied report or in some alternative format like an oral presentation, an infographic, or a video, you ensure that your findings become part of the ongoing conversation of scholarship in your field, forming part of the foundation for future researchers. This chapter provides an introduction to writing about qualitative research findings. It will outline how writing continues to contribute to the analysis process, what concerns researchers should keep in mind as they draft their presentations of findings, and how best to organize qualitative research writing

As you move through the research process, it is essential to keep yourself organized. Organizing your data, memos, and notes aids both the analytical and the writing processes. Whether you use electronic or physical, real-world filing and organizational systems, these systems help make sense of the mountains of data you have and assure you focus your attention on the themes and ideas you have determined are important (Warren and Karner 2015). Be sure that you have kept detailed notes on all of the decisions you have made and procedures you have followed in carrying out research design, data collection, and analysis, as these will guide your ultimate write-up.

First and foremost, researchers should keep in mind that writing is in fact a form of thinking. Writing is an excellent way to discover ideas and arguments and to further develop an analysis. As you write, more ideas will occur to you, things that were previously confusing will start to make sense, and arguments will take a clear shape rather than being amorphous and poorly-organized. However, writing-as-thinking cannot be the final version that you share with others. Good-quality writing does not display the workings of your thought process. It is reorganized and revised (more on that later) to present the data and arguments important in a particular piece. And revision is totally normal! No one expects the first draft of a piece of writing to be ready for prime time. So write rough drafts and memos and notes to yourself and use them to think, and then revise them until the piece is the way you want it to be for sharing.

Bergin (2018) lays out a set of key concerns for appropriate writing about research. First, present your results accurately, without exaggerating or misrepresenting. It is very easy to overstate your findings by accident if you are enthusiastic about what you have found, so it is important to take care and use appropriate cautions about the limitations of the research. You also need to work to ensure that you communicate your findings in a way people can understand, using clear and appropriate language that is adjusted to the level of those you are communicating with. And you must be clear and transparent about the methodological strategies employed in the research. Remember, the goal is, as much as possible, to describe your research in a way that would permit others to replicate the study. There are a variety of other concerns and decision points that qualitative researchers must keep in mind, including the extent to which to include quantification in their presentation of results, ethics, considerations of audience and voice, and how to bring the richness of qualitative data to life.

Quantification, as you have learned, refers to the process of turning data into numbers. It can indeed be very useful to count and tabulate quantitative data drawn from qualitative research. For instance, if you were doing a study of dual-earner households and wanted to know how many had an equal division of household labor and how many did not, you might want to count those numbers up and include them as part of the final write-up. However, researchers need to take care when they are writing about quantified qualitative data. Qualitative data is not as generalizable as quantitative data, so quantification can be very misleading. Thus, qualitative researchers should strive to use raw numbers instead of the percentages that are more appropriate for quantitative research. Writing, for instance, “15 of the 20 people I interviewed prefer pancakes to waffles” is a simple description of the data; writing “75% of people prefer pancakes” suggests a generalizable claim that is not likely supported by the data. Note that mixing numbers with qualitative data is really a type of mixed-methods approach. Mixed-methods approaches are good, but sometimes they seduce researchers into focusing on the persuasive power of numbers and tables rather than capitalizing on the inherent richness of their qualitative data.

A variety of issues of scholarly ethics and research integrity are raised by the writing process. Some of these are unique to qualitative research, while others are more universal concerns for all academic and professional writing. For example, it is essential to avoid plagiarism and misuse of sources. All quotations that appear in a text must be properly cited, whether with in-text and bibliographic citations to the source or with an attribution to the research participant (or the participant’s pseudonym or description in order to protect confidentiality) who said those words. Where writers will paraphrase a text or a participant’s words, they need to make sure that the paraphrase they develop accurately reflects the meaning of the original words. Thus, some scholars suggest that participants should have the opportunity to read (or to have read to them, if they cannot read the text themselves) all sections of the text in which they, their words, or their ideas are presented to ensure accuracy and enable participants to maintain control over their lives.

Audience and Voice

When writing, researchers must consider their audience(s) and the effects they want their writing to have on these audiences. The designated audience will dictate the voice used in the writing, or the individual style and personality of a piece of text. Keep in mind that the potential audience for qualitative research is often much more diverse than that for quantitative research because of the accessibility of the data and the extent to which the writing can be accessible and interesting. Yet individual pieces of writing are typically pitched to a more specific subset of the audience.

Let us consider one potential research study, an ethnography involving participant-observation of the same children both when they are at daycare facility and when they are at home with their families to try to understand how daycare might impact behavior and social development. The findings of this study might be of interest to a wide variety of potential audiences: academic peers, whether at your own academic institution, in your broader discipline, or multidisciplinary; people responsible for creating laws and policies; practitioners who run or teach at day care centers; and the general public, including both people who are interested in child development more generally and those who are themselves parents making decisions about child care for their own children. And the way you write for each of these audiences will be somewhat different. Take a moment and think through what some of these differences might look like.

If you are writing to academic audiences, using specialized academic language and working within the typical constraints of scholarly genres, as will be discussed below, can be an important part of convincing others that your work is legitimate and should be taken seriously. Your writing will be formal. Even if you are writing for students and faculty you already know—your classmates, for instance—you are often asked to imitate the style of academic writing that is used in publications, as this is part of learning to become part of the scholarly conversation. When speaking to academic audiences outside your discipline, you may need to be more careful about jargon and specialized language, as disciplines do not always share the same key terms. For instance, in sociology, scholars use the term diffusion to refer to the way new ideas or practices spread from organization to organization. In the field of international relations, scholars often used the term cascade to refer to the way ideas or practices spread from nation to nation. These terms are describing what is fundamentally the same concept, but they are different terms—and a scholar from one field might have no idea what a scholar from a different field is talking about! Therefore, while the formality and academic structure of the text would stay the same, a writer with a multidisciplinary audience might need to pay more attention to defining their terms in the body of the text.

It is not only other academic scholars who expect to see formal writing. Policymakers tend to expect formality when ideas are presented to them, as well. However, the content and style of the writing will be different. Much less academic jargon should be used, and the most important findings and policy implications should be emphasized right from the start rather than initially focusing on prior literature and theoretical models as you might for an academic audience. Long discussions of research methods should also be minimized. Similarly, when you write for practitioners, the findings and implications for practice should be highlighted. The reading level of the text will vary depending on the typical background of the practitioners to whom you are writing—you can make very different assumptions about the general knowledge and reading abilities of a group of hospital medical directors with MDs than you can about a group of case workers who have a post-high-school certificate. Consider the primary language of your audience as well. The fact that someone can get by in spoken English does not mean they have the vocabulary or English reading skills to digest a complex report. But the fact that someone’s vocabulary is limited says little about their intellectual abilities, so try your best to convey the important complexity of the ideas and findings from your research without dumbing them down—even if you must limit your vocabulary usage.

When writing for the general public, you will want to move even further towards emphasizing key findings and policy implications, but you also want to draw on the most interesting aspects of your data. General readers will read sociological texts that are rich with ethnographic or other kinds of detail—it is almost like reality television on a page! And this is a contrast to busy policymakers and practitioners, who probably want to learn the main findings as quickly as possible so they can go about their busy lives. But also keep in mind that there is a wide variation in reading levels. Journalists at publications pegged to the general public are often advised to write at about a tenth-grade reading level, which would leave most of the specialized terminology we develop in our research fields out of reach. If you want to be accessible to even more people, your vocabulary must be even more limited. The excellent exercise of trying to write using the 1,000 most common English words, available at the Up-Goer Five website ( https://www.splasho.com/upgoer5/ ) does a good job of illustrating this challenge (Sanderson n.d.).

Another element of voice is whether to write in the first person. While many students are instructed to avoid the use of the first person in academic writing, this advice needs to be taken with a grain of salt. There are indeed many contexts in which the first person is best avoided, at least as long as writers can find ways to build strong, comprehensible sentences without its use, including most quantitative research writing. However, if the alternative to using the first person is crafting a sentence like “it is proposed that the researcher will conduct interviews,” it is preferable to write “I propose to conduct interviews.” In qualitative research, in fact, the use of the first person is far more common. This is because the researcher is central to the research project. Qualitative researchers can themselves be understood as research instruments, and thus eliminating the use of the first person in writing is in a sense eliminating information about the conduct of the researchers themselves.

But the question really extends beyond the issue of first-person or third-person. Qualitative researchers have choices about how and whether to foreground themselves in their writing, not just in terms of using the first person, but also in terms of whether to emphasize their own subjectivity and reflexivity, their impressions and ideas, and their role in the setting. In contrast, conventional quantitative research in the positivist tradition really tries to eliminate the author from the study—which indeed is exactly why typical quantitative research avoids the use of the first person. Keep in mind that emphasizing researchers’ roles and reflexivity and using the first person does not mean crafting articles that provide overwhelming detail about the author’s thoughts and practices. Readers do not need to hear, and should not be told, which database you used to search for journal articles, how many hours you spent transcribing, or whether the research process was stressful—save these things for the memos you write to yourself. Rather, readers need to hear how you interacted with research participants, how your standpoint may have shaped the findings, and what analytical procedures you carried out.

Making Data Come Alive

One of the most important parts of writing about qualitative research is presenting the data in a way that makes its richness and value accessible to readers. As the discussion of analysis in the prior chapter suggests, there are a variety of ways to do this. Researchers may select key quotes or images to illustrate points, write up specific case studies that exemplify their argument, or develop vignettes (little stories) that illustrate ideas and themes, all drawing directly on the research data. Researchers can also write more lengthy summaries, narratives, and thick descriptions.

Nearly all qualitative work includes quotes from research participants or documents to some extent, though ethnographic work may focus more on thick description than on relaying participants’ own words. When quotes are presented, they must be explained and interpreted—they cannot stand on their own. This is one of the ways in which qualitative research can be distinguished from journalism. Journalism presents what happened, but social science needs to present the “why,” and the why is best explained by the researcher.

So how do authors go about integrating quotes into their written work? Julie Posselt (2017), a sociologist who studies graduate education, provides a set of instructions. First of all, authors need to remain focused on the core questions of their research, and avoid getting distracted by quotes that are interesting or attention-grabbing but not so relevant to the research question. Selecting the right quotes, those that illustrate the ideas and arguments of the paper, is an important part of the writing process. Second, not all quotes should be the same length (just like not all sentences or paragraphs in a paper should be the same length). Include some quotes that are just phrases, others that are a sentence or so, and others that are longer. We call longer quotes, generally those more than about three lines long, block quotes , and they are typically indented on both sides to set them off from the surrounding text. For all quotes, be sure to summarize what the quote should be telling or showing the reader, connect this quote to other quotes that are similar or different, and provide transitions in the discussion to move from quote to quote and from topic to topic. Especially for longer quotes, it is helpful to do some of this writing before the quote to preview what is coming and other writing after the quote to make clear what readers should have come to understand. Remember, it is always the author’s job to interpret the data. Presenting excerpts of the data, like quotes, in a form the reader can access does not minimize the importance of this job. Be sure that you are explaining the meaning of the data you present.

A few more notes about writing with quotes: avoid patchwriting, whether in your literature review or the section of your paper in which quotes from respondents are presented. Patchwriting is a writing practice wherein the author lightly paraphrases original texts but stays so close to those texts that there is little the author has added. Sometimes, this even takes the form of presenting a series of quotes, properly documented, with nothing much in the way of text generated by the author. A patchwriting approach does not build the scholarly conversation forward, as it does not represent any kind of new contribution on the part of the author. It is of course fine to paraphrase quotes, as long as the meaning is not changed. But if you use direct quotes, do not edit the text of the quotes unless how you edit them does not change the meaning and you have made clear through the use of ellipses (…) and brackets ([])what kinds of edits have been made. For example, consider this exchange from Matthew Desmond’s (2012:1317) research on evictions:

The thing was, I wasn’t never gonna let Crystal come and stay with me from the get go. I just told her that to throw her off. And she wasn’t fittin’ to come stay with me with no money…No. Nope. You might as well stay in that shelter.

A paraphrase of this exchange might read “She said that she was going to let Crystal stay with her if Crystal did not have any money.” Paraphrases like that are fine. What is not fine is rewording the statement but treating it like a quote, for instance writing:

The thing was, I was not going to let Crystal come and stay with me from beginning. I just told her that to throw her off. And it was not proper for her to come stay with me without any money…No. Nope. You might as well stay in that shelter.

But as you can see, the change in language and style removes some of the distinct meaning of the original quote. Instead, writers should leave as much of the original language as possible. If some text in the middle of the quote needs to be removed, as in this example, ellipses are used to show that this has occurred. And if a word needs to be added to clarify, it is placed in square brackets to show that it was not part of the original quote.

Data can also be presented through the use of data displays like tables, charts, graphs, diagrams, and infographics created for publication or presentation, as well as through the use of visual material collected during the research process. Note that if visuals are used, the author must have the legal right to use them. Photographs or diagrams created by the author themselves—or by research participants who have signed consent forms for their work to be used, are fine. But photographs, and sometimes even excerpts from archival documents, may be owned by others from whom researchers must get permission in order to use them.

A large percentage of qualitative research does not include any data displays or visualizations. Therefore, researchers should carefully consider whether the use of data displays will help the reader understand the data. One of the most common types of data displays used by qualitative researchers are simple tables. These might include tables summarizing key data about cases included in the study; tables laying out the characteristics of different taxonomic elements or types developed as part of the analysis; tables counting the incidence of various elements; and 2×2 tables (two columns and two rows) illuminating a theory. Basic network or process diagrams are also commonly included. If data displays are used, it is essential that researchers include context and analysis alongside data displays rather than letting them stand by themselves, and it is preferable to continue to present excerpts and examples from the data rather than just relying on summaries in the tables.

If you will be using graphs, infographics, or other data visualizations, it is important that you attend to making them useful and accurate (Bergin 2018). Think about the viewer or user as your audience and ensure the data visualizations will be comprehensible. You may need to include more detail or labels than you might think. Ensure that data visualizations are laid out and labeled clearly and that you make visual choices that enhance viewers’ ability to understand the points you intend to communicate using the visual in question. Finally, given the ease with which it is possible to design visuals that are deceptive or misleading, it is essential to make ethical and responsible choices in the construction of visualization so that viewers will interpret them in accurate ways.

The Genre of Research Writing

As discussed above, the style and format in which results are presented depends on the audience they are intended for. These differences in styles and format are part of the genre of writing. Genre is a term referring to the rules of a specific form of creative or productive work. Thus, the academic journal article—and student papers based on this form—is one genre. A report or policy paper is another. The discussion below will focus on the academic journal article, but note that reports and policy papers follow somewhat different formats. They might begin with an executive summary of one or a few pages, include minimal background, focus on key findings, and conclude with policy implications, shifting methods and details about the data to an appendix. But both academic journal articles and policy papers share some things in common, for instance the necessity for clear writing, a well-organized structure, and the use of headings.

So what factors make up the genre of the academic journal article in sociology? While there is some flexibility, particularly for ethnographic work, academic journal articles tend to follow a fairly standard format. They begin with a “title page” that includes the article title (often witty and involving scholarly inside jokes, but more importantly clearly describing the content of the article); the authors’ names and institutional affiliations, an abstract , and sometimes keywords designed to help others find the article in databases. An abstract is a short summary of the article that appears both at the very beginning of the article and in search databases. Abstracts are designed to aid readers by giving them the opportunity to learn enough about an article that they can determine whether it is worth their time to read the complete text. They are written about the article, and thus not in the first person, and clearly summarize the research question, methodological approach, main findings, and often the implications of the research.

After the abstract comes an “introduction” of a page or two that details the research question, why it matters, and what approach the paper will take. This is followed by a literature review of about a quarter to a third the length of the entire paper. The literature review is often divided, with headings, into topical subsections, and is designed to provide a clear, thorough overview of the prior research literature on which a paper has built—including prior literature the new paper contradicts. At the end of the literature review it should be made clear what researchers know about the research topic and question, what they do not know, and what this new paper aims to do to address what is not known.

The next major section of the paper is the section that describes research design, data collection, and data analysis, often referred to as “research methods” or “methodology.” This section is an essential part of any written or oral presentation of your research. Here, you tell your readers or listeners “how you collected and interpreted your data” (Taylor, Bogdan, and DeVault 2016:215). Taylor, Bogdan, and DeVault suggest that the discussion of your research methods include the following:

• The particular approach to data collection used in the study;
• Any theoretical perspective(s) that shaped your data collection and analytical approach;
• When the study occurred, over how long, and where (concealing identifiable details as needed);
• A description of the setting and participants, including sampling and selection criteria (if an interview-based study, the number of participants should be clearly stated);
• The researcher’s perspective in carrying out the study, including relevant elements of their identity and standpoint, as well as their role (if any) in research settings; and
• The approach to analyzing the data.

After the methods section comes a section, variously titled but often called “data,” that takes readers through the analysis. This section is where the thick description narrative; the quotes, broken up by theme or topic, with their interpretation; the discussions of case studies; most data displays (other than perhaps those outlining a theoretical model or summarizing descriptive data about cases); and other similar material appears. The idea of the data section is to give readers the ability to see the data for themselves and to understand how this data supports the ultimate conclusions. Note that all tables and figures included in formal publications should be titled and numbered.

At the end of the paper come one or two summary sections, often called “discussion” and/or “conclusion.” If there is a separate discussion section, it will focus on exploring the overall themes and findings of the paper. The conclusion clearly and succinctly summarizes the findings and conclusions of the paper, the limitations of the research and analysis, any suggestions for future research building on the paper or addressing these limitations, and implications, be they for scholarship and theory or policy and practice.

After the end of the textual material in the paper comes the bibliography, typically called “works cited” or “references.” The references should appear in a consistent citation style—in sociology, we often use the American Sociological Association format (American Sociological Association 2019), but other formats may be used depending on where the piece will eventually be published. Care should be taken to ensure that in-text citations also reflect the chosen citation style. In some papers, there may be an appendix containing supplemental information such as a list of interview questions or an additional data visualization.

Note that when researchers give presentations to scholarly audiences, the presentations typically follow a format similar to that of scholarly papers, though given time limitations they are compressed. Abstracts and works cited are often not part of the presentation, though in-text citations are still used. The literature review presented will be shortened to only focus on the most important aspects of the prior literature, and only key examples from the discussion of data will be included. For long or complex papers, sometimes only one of several findings is the focus of the presentation. Of course, presentations for other audiences may be constructed differently, with greater attention to interesting elements of the data and findings as well as implications and less to the literature review and methods.

Concluding Your Work

After you have written a complete draft of the paper, be sure you take the time to revise and edit your work. There are several important strategies for revision. First, put your work away for a little while. Even waiting a day to revise is better than nothing, but it is best, if possible, to take much more time away from the text. This helps you forget what your writing looks like and makes it easier to find errors, mistakes, and omissions. Second, show your work to others. Ask them to read your work and critique it, pointing out places where the argument is weak, where you may have overlooked alternative explanations, where the writing could be improved, and what else you need to work on. Finally, read your work out loud to yourself (or, if you really need an audience, try reading to some stuffed animals). Reading out loud helps you catch wrong words, tricky sentences, and many other issues. But as important as revision is, try to avoid perfectionism in writing (Warren and Karner 2015). Writing can always be improved, no matter how much time you spend on it. Those improvements, however, have diminishing returns, and at some point the writing process needs to conclude so the writing can be shared with the world.

Of course, the main goal of writing up the results of a research project is to share with others. Thus, researchers should be considering how they intend to disseminate their results. What conferences might be appropriate? Where can the paper be submitted? Note that if you are an undergraduate student, there are a wide variety of journals that accept and publish research conducted by undergraduates. Some publish across disciplines, while others are specific to disciplines. Other work, such as reports, may be best disseminated by publication online on relevant organizational websites.

After a project is completed, be sure to take some time to organize your research materials and archive them for longer-term storage. Some Institutional Review Board (IRB) protocols require that original data, such as interview recordings, transcripts, and field notes, be preserved for a specific number of years in a protected (locked for paper or password-protected for digital) form and then destroyed, so be sure that your plans adhere to the IRB requirements. Be sure you keep any materials that might be relevant for future related research or for answering questions people may ask later about your project.

And then what? Well, then it is time to move on to your next research project. Research is a long-term endeavor, not a one-time-only activity. We build our skills and our expertise as we continue to pursue research. So keep at it.

• Find a short article that uses qualitative methods. The sociological magazine Contexts is a good place to find such pieces. Write an abstract of the article.
• Choose a sociological journal article on a topic you are interested in that uses some form of qualitative methods and is at least 20 pages long. Rewrite the article as a five-page research summary accessible to non-scholarly audiences.
• Choose a concept or idea you have learned in this course and write an explanation of it using the Up-Goer Five Text Editor ( https://www.splasho.com/upgoer5/ ), a website that restricts your writing to the 1,000 most common English words. What was this experience like? What did it teach you about communicating with people who have a more limited English-language vocabulary—and what did it teach you about the utility of having access to complex academic language?
• Select five or more sociological journal articles that all use the same basic type of qualitative methods (interviewing, ethnography, documents, or visual sociology). Using what you have learned about coding, code the methods sections of each article, and use your coding to figure out what is common in how such articles discuss their research design, data collection, and analysis methods.
• Return to an exercise you completed earlier in this course and revise your work. What did you change? How did revising impact the final product?
• Find a quote from the transcript of an interview, a social media post, or elsewhere that has not yet been interpreted or explained. Write a paragraph that includes the quote along with an explanation of its sociological meaning or significance.

The style or personality of a piece of writing, including such elements as tone, word choice, syntax, and rhythm.

A quotation, usually one of some length, which is set off from the main text by being indented on both sides rather than being placed in quotation marks.

A classification of written or artistic work based on form, content, and style.

A short summary of a text written from the perspective of a reader rather than from the perspective of an author.

Social Data Analysis Copyright © 2021 by Mikaila Mariel Lemonik Arthur is licensed under a Creative Commons Attribution-NonCommercial-ShareAlike 4.0 International License , except where otherwise noted.

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4 Writing Up the Research Findings

• Published: May 2013
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This chapter discusses different theoretical and practical tools which are meant to assist researchers in writing up their findings. It first deals with the problem of how to reduce a large amount of data into something that can be communicated in a short journal article or book chapter. It then discusses different ways of organizing the presentation of one's findings in terms of the macrostructure, i.e. the general argumentative or communicative drive of the research text, and the microstructure, i.e. the crafting of concrete sentences and paragraphs, of the text. Finally, the chapter examines the role of theory in writing up the research findings and presents two examples of excellent interview reports that demonstrate diametrically opposed uses of theory. The first example uses theory in articulating the findings by telling an analytic story, while the other is theory-free, but deeply evocative, written in a literary style, crafted rather more like a mystery story.

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• UNC Libraries
• HSL Subject Research
• Qualitative Research Resources
• Writing Up Your Research

Qualitative Research Resources: Writing Up Your Research

Created by health science librarians.

• What is Qualitative Research?
• Qualitative Research Basics
• Special Topics
• Training Opportunities: UNC & Beyond
• Help at UNC
• Qualitative Software for Coding/Analysis
• Software for Audio, Video, Online Surveys
• Finding Qualitative Studies
• Assessing Qualitative Research

About this Page

Writing conventions for qualitative research, sample size/sampling:.

• Integrating Qualitative Research into Systematic Reviews
• Publishing Qualitative Research
• Presenting Qualitative Research
• Qualitative & Libraries: a few gems
• Data Repositories

Why is this information important?

• The conventions of good writing and research reporting are different for qualitative and quantitative research.
• Your article will be more likely to be published if you make sure you follow appropriate conventions in your writing.

On this page you will find the following helpful resources:

• Articles with information on what journal editors look for in qualitative research articles.
• Articles and books on the craft of collating qualitative data into a research article.

These articles provide tips on what journal editors look for when they read qualitative research papers for potential publication.  Also see Assessing Qualitative Research tab in this guide for additional information that may be helpful to authors.

Belgrave, L., D. Zablotsky and M.A. Guadagno.(2002). How do we talk to each other? Writing qualitative research for quantitative readers . Qualitative Health Research , 12(10),1427-1439.

Hunt, Brandon. (2011) Publishing Qualitative Research in Counseling Journals . Journal of Counseling and Development 89(3):296-300.

Fetters, Michael and Dawn Freshwater. (2015). Publishing a Methodological Mixed Methods Research Article. Journal of Mixed Methods Research 9(3): 203-213.

Koch, Lynn C., Tricia Niesz, and Henry McCarthy. (2014). Understanding and Reporting Qualitative Research: An Analytic Review and Recommendations for Submitting Authors. Rehabilitation Counseling Bulletin 57(3):131-143.

Morrow, Susan L. (2005) Quality and Trustworthiness in Qualitative Research in Counseling Psychology ; Journal of Counseling Psychology 52(2):250-260.

Oliver, Deborah P. (2011) "Rigor in Qualitative Research." Research on Aging 33(4): 359-360.

Sandelowski, M., & Leeman, J. (2012). Writing usable qualitative health research findings . Qual Health Res, 22(10), 1404-1413.

Schoenberg, Nancy E., Miller, Edward A., and Pruchno, Rachel. (2011) The qualitative portfolio at The Gerontologist : strong and getting stronger. Gerontologist 51(3): 281-284.

Weaver-Hightower, M. B. (2019). How to write qualitative research . [e-book]

Sidhu, Kalwant, Roger Jones, and Fiona Stevenson (2017). Publishing qualitative research in medical journals. Br J Gen Pract ; 67 (658): 229-230. DOI: 10.3399/bjgp17X690821 PMID: 28450340

• This article is based on a workshop on publishing qualitative studies held at the Society for Academic Primary Care Annual Conference, Dublin, July 2016.

Smith, Mary Lee.(1987) Publishing Qualitative Research. American Educational Research Journal 24(2): 173-183.

Tong, Allison, Sainsbury, Peter, Craig, Jonathan ; Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups , International Journal for Quality in Health Care , Volume 19, Issue 6, 1 December 2007, Pages 349–357, https://doi.org/10.1093/intqhc/mzm042 .

Tracy, Sarah. (2010) Qualitative Quality: Eight 'Big-Tent' Criteria for Excellent Qualitative Research. Qualitative Inquiry 16(10):837-51.

Because reviewers are not always familiar with qualitative methods, they may ask for explanation or justification of your methods when you submit an article. Because different disciplines,different qualitative methods, and different contexts may dictate different approaches to this issue, you may want to consult articles in your field and in target journals for publication.  Additionally, here are some articles that may be helpful in thinking about this issue. 

Bonde, Donna. (2013). Qualitative Interviews: When Enough is Enough . Research by Design.

Guest, Greg, Arwen Bunce, and Laura Johnson. (2006) How Many Interviews are Enough?: An Experiment with Data Saturation and Variability. Field Methods 18(1): 59-82.

Morse, Janice M. (2015) "Data Were Saturated..." Qualitative Health Research 25(5): 587-88 . doi:10.1177/1049732315576699.

Nelson, J. (2016) "Using Conceptual Depth Criteria: Addressing the Challenge of Reaching Saturation in Qualitative Research." Qualitative Research, December. doi:10.1177/1468794116679873.

Patton, Michael Quinn. (2015) "Chapter 5: Designing Qualitative Studies, Module 30 Purposeful Sampling and Case Selection. In Qualitative Research & Evaluation Methods: Integrating Theory and Practice, Fourth edition, pp. 264-72. Thousand Oaks, California: SAGE Publications, Inc. ISBN: 978-1-4129-7212-3

Small, Mario Luis. (2009) 'How Many Cases Do I Need?': On Science and the Logic of Case-Based Selection in Field-Based Research. Ethnography 10(1): 538.

Search the UNC-CH catalog for books about qualitative writing . Selected general books from the catalog are listed below. If you are a researcher at another institution, ask your librarian for assistance locating similar books in your institution's catalog or ordering them via InterLibrary Loan.  

Oft quoted and food for thought

• Morse, J. M. (1997). " Perfectly healthy, but dead": the myth of inter-rater reliability. DOI:10.1177/104973239700700401 Editorial
• Silberzahn, R., Uhlmann, E. L., Martin, D. P., Anselmi, P., Aust, F., Awtrey, E., ... & Carlsson, R. (2018). Many analysts, one data set: Making transparent how variations in analytic choices affect results. Advances in Methods and Practices in Psychologi
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Home » Research Findings – Types Examples and Writing Guide

Research Findings – Types Examples and Writing Guide

Table of Contents

Research Findings

Definition:

Research findings refer to the results obtained from a study or investigation conducted through a systematic and scientific approach. These findings are the outcomes of the data analysis, interpretation, and evaluation carried out during the research process.

Types of Research Findings

There are two main types of research findings:

Qualitative Findings

Qualitative research is an exploratory research method used to understand the complexities of human behavior and experiences. Qualitative findings are non-numerical and descriptive data that describe the meaning and interpretation of the data collected. Examples of qualitative findings include quotes from participants, themes that emerge from the data, and descriptions of experiences and phenomena.

Quantitative Findings

Quantitative research is a research method that uses numerical data and statistical analysis to measure and quantify a phenomenon or behavior. Quantitative findings include numerical data such as mean, median, and mode, as well as statistical analyses such as t-tests, ANOVA, and regression analysis. These findings are often presented in tables, graphs, or charts.

Both qualitative and quantitative findings are important in research and can provide different insights into a research question or problem. Combining both types of findings can provide a more comprehensive understanding of a phenomenon and improve the validity and reliability of research results.

Parts of Research Findings

Research findings typically consist of several parts, including:

• Introduction: This section provides an overview of the research topic and the purpose of the study.
• Literature Review: This section summarizes previous research studies and findings that are relevant to the current study.
• Methodology : This section describes the research design, methods, and procedures used in the study, including details on the sample, data collection, and data analysis.
• Results : This section presents the findings of the study, including statistical analyses and data visualizations.
• Discussion : This section interprets the results and explains what they mean in relation to the research question(s) and hypotheses. It may also compare and contrast the current findings with previous research studies and explore any implications or limitations of the study.
• Conclusion : This section provides a summary of the key findings and the main conclusions of the study.
• Recommendations: This section suggests areas for further research and potential applications or implications of the study’s findings.

How to Write Research Findings

Writing research findings requires careful planning and attention to detail. Here are some general steps to follow when writing research findings:

• Organize your findings: Before you begin writing, it’s essential to organize your findings logically. Consider creating an outline or a flowchart that outlines the main points you want to make and how they relate to one another.
• Use clear and concise language : When presenting your findings, be sure to use clear and concise language that is easy to understand. Avoid using jargon or technical terms unless they are necessary to convey your meaning.
• Use visual aids : Visual aids such as tables, charts, and graphs can be helpful in presenting your findings. Be sure to label and title your visual aids clearly, and make sure they are easy to read.
• Use headings and subheadings: Using headings and subheadings can help organize your findings and make them easier to read. Make sure your headings and subheadings are clear and descriptive.
• Interpret your findings : When presenting your findings, it’s important to provide some interpretation of what the results mean. This can include discussing how your findings relate to the existing literature, identifying any limitations of your study, and suggesting areas for future research.
• Be precise and accurate : When presenting your findings, be sure to use precise and accurate language. Avoid making generalizations or overstatements and be careful not to misrepresent your data.
• Edit and revise: Once you have written your research findings, be sure to edit and revise them carefully. Check for grammar and spelling errors, make sure your formatting is consistent, and ensure that your writing is clear and concise.

Research Findings Example

Following is a Research Findings Example sample for students:

Title: The Effects of Exercise on Mental Health

Sample : 500 participants, both men and women, between the ages of 18-45.

Methodology : Participants were divided into two groups. The first group engaged in 30 minutes of moderate intensity exercise five times a week for eight weeks. The second group did not exercise during the study period. Participants in both groups completed a questionnaire that assessed their mental health before and after the study period.

Findings : The group that engaged in regular exercise reported a significant improvement in mental health compared to the control group. Specifically, they reported lower levels of anxiety and depression, improved mood, and increased self-esteem.

Conclusion : Regular exercise can have a positive impact on mental health and may be an effective intervention for individuals experiencing symptoms of anxiety or depression.

Applications of Research Findings

Research findings can be applied in various fields to improve processes, products, services, and outcomes. Here are some examples:

• Healthcare : Research findings in medicine and healthcare can be applied to improve patient outcomes, reduce morbidity and mortality rates, and develop new treatments for various diseases.
• Education : Research findings in education can be used to develop effective teaching methods, improve learning outcomes, and design new educational programs.
• Technology : Research findings in technology can be applied to develop new products, improve existing products, and enhance user experiences.
• Business : Research findings in business can be applied to develop new strategies, improve operations, and increase profitability.
• Public Policy: Research findings can be used to inform public policy decisions on issues such as environmental protection, social welfare, and economic development.
• Social Sciences: Research findings in social sciences can be used to improve understanding of human behavior and social phenomena, inform public policy decisions, and develop interventions to address social issues.
• Agriculture: Research findings in agriculture can be applied to improve crop yields, develop new farming techniques, and enhance food security.
• Sports : Research findings in sports can be applied to improve athlete performance, reduce injuries, and develop new training programs.

When to use Research Findings

Research findings can be used in a variety of situations, depending on the context and the purpose. Here are some examples of when research findings may be useful:

• Decision-making : Research findings can be used to inform decisions in various fields, such as business, education, healthcare, and public policy. For example, a business may use market research findings to make decisions about new product development or marketing strategies.
• Problem-solving : Research findings can be used to solve problems or challenges in various fields, such as healthcare, engineering, and social sciences. For example, medical researchers may use findings from clinical trials to develop new treatments for diseases.
• Policy development : Research findings can be used to inform the development of policies in various fields, such as environmental protection, social welfare, and economic development. For example, policymakers may use research findings to develop policies aimed at reducing greenhouse gas emissions.
• Program evaluation: Research findings can be used to evaluate the effectiveness of programs or interventions in various fields, such as education, healthcare, and social services. For example, educational researchers may use findings from evaluations of educational programs to improve teaching and learning outcomes.
• Innovation: Research findings can be used to inspire or guide innovation in various fields, such as technology and engineering. For example, engineers may use research findings on materials science to develop new and innovative products.

Purpose of Research Findings

The purpose of research findings is to contribute to the knowledge and understanding of a particular topic or issue. Research findings are the result of a systematic and rigorous investigation of a research question or hypothesis, using appropriate research methods and techniques.

The main purposes of research findings are:

• To generate new knowledge : Research findings contribute to the body of knowledge on a particular topic, by adding new information, insights, and understanding to the existing knowledge base.
• To test hypotheses or theories : Research findings can be used to test hypotheses or theories that have been proposed in a particular field or discipline. This helps to determine the validity and reliability of the hypotheses or theories, and to refine or develop new ones.
• To inform practice: Research findings can be used to inform practice in various fields, such as healthcare, education, and business. By identifying best practices and evidence-based interventions, research findings can help practitioners to make informed decisions and improve outcomes.
• To identify gaps in knowledge: Research findings can help to identify gaps in knowledge and understanding of a particular topic, which can then be addressed by further research.
• To contribute to policy development: Research findings can be used to inform policy development in various fields, such as environmental protection, social welfare, and economic development. By providing evidence-based recommendations, research findings can help policymakers to develop effective policies that address societal challenges.

Characteristics of Research Findings

Research findings have several key characteristics that distinguish them from other types of information or knowledge. Here are some of the main characteristics of research findings:

• Objective : Research findings are based on a systematic and rigorous investigation of a research question or hypothesis, using appropriate research methods and techniques. As such, they are generally considered to be more objective and reliable than other types of information.
• Empirical : Research findings are based on empirical evidence, which means that they are derived from observations or measurements of the real world. This gives them a high degree of credibility and validity.
• Generalizable : Research findings are often intended to be generalizable to a larger population or context beyond the specific study. This means that the findings can be applied to other situations or populations with similar characteristics.
• Transparent : Research findings are typically reported in a transparent manner, with a clear description of the research methods and data analysis techniques used. This allows others to assess the credibility and reliability of the findings.
• Peer-reviewed: Research findings are often subject to a rigorous peer-review process, in which experts in the field review the research methods, data analysis, and conclusions of the study. This helps to ensure the validity and reliability of the findings.
• Reproducible : Research findings are often designed to be reproducible, meaning that other researchers can replicate the study using the same methods and obtain similar results. This helps to ensure the validity and reliability of the findings.

Advantages of Research Findings

Research findings have many advantages, which make them valuable sources of knowledge and information. Here are some of the main advantages of research findings:

• Evidence-based: Research findings are based on empirical evidence, which means that they are grounded in data and observations from the real world. This makes them a reliable and credible source of information.
• Inform decision-making: Research findings can be used to inform decision-making in various fields, such as healthcare, education, and business. By identifying best practices and evidence-based interventions, research findings can help practitioners and policymakers to make informed decisions and improve outcomes.
• Identify gaps in knowledge: Research findings can help to identify gaps in knowledge and understanding of a particular topic, which can then be addressed by further research. This contributes to the ongoing development of knowledge in various fields.
• Improve outcomes : Research findings can be used to develop and implement evidence-based practices and interventions, which have been shown to improve outcomes in various fields, such as healthcare, education, and social services.
• Foster innovation: Research findings can inspire or guide innovation in various fields, such as technology and engineering. By providing new information and understanding of a particular topic, research findings can stimulate new ideas and approaches to problem-solving.
• Enhance credibility: Research findings are generally considered to be more credible and reliable than other types of information, as they are based on rigorous research methods and are subject to peer-review processes.

Limitations of Research Findings

While research findings have many advantages, they also have some limitations. Here are some of the main limitations of research findings:

• Limited scope: Research findings are typically based on a particular study or set of studies, which may have a limited scope or focus. This means that they may not be applicable to other contexts or populations.
• Potential for bias : Research findings can be influenced by various sources of bias, such as researcher bias, selection bias, or measurement bias. This can affect the validity and reliability of the findings.
• Ethical considerations: Research findings can raise ethical considerations, particularly in studies involving human subjects. Researchers must ensure that their studies are conducted in an ethical and responsible manner, with appropriate measures to protect the welfare and privacy of participants.
• Time and resource constraints : Research studies can be time-consuming and require significant resources, which can limit the number and scope of studies that are conducted. This can lead to gaps in knowledge or a lack of research on certain topics.
• Complexity: Some research findings can be complex and difficult to interpret, particularly in fields such as science or medicine. This can make it challenging for practitioners and policymakers to apply the findings to their work.
• Lack of generalizability : While research findings are intended to be generalizable to larger populations or contexts, there may be factors that limit their generalizability. For example, cultural or environmental factors may influence how a particular intervention or treatment works in different populations or contexts.

About the author

Muhammad Hassan

Researcher, Academic Writer, Web developer

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A scoping review examining patient experience and what matters to people experiencing homelessness when seeking healthcare

• Jean-Philippe Miller 1 ,
• Jennie Hutton 1 , 2 , 7 , 8 ,
• Claire Doherty 1 ,
• Shannen Vallesi 3 ,
• Jane Currie 4 ,
• Katrina Rushworth 1 ,
• Matthew Larkin 5 ,
• Matthew Scott 1 , 6 ,
• James Morrow 6 &
• Lisa Wood 3  

BMC Health Services Research volume  24 , Article number:  492 ( 2024 ) Cite this article

Metrics details

Homelessness is associated with significant health disparities. Conventional health services often fail to address the unique needs and lived experience of homeless individuals and fail to include participatory design when planning health services. This scoping review aimed to examine areas of patient experience that are most frequently reported by people experiencing homelessness when seeking and receiving healthcare, and to identify existing surveys used to measure patient experience for this cohort.

A scoping review was undertaken reported according to the PRISMA-ScR 2020 Statement. Databases were searched on 1 December 2022: MEDLINE, EMBASE, APA PsychINFO and CINAHL. Included studies focused on people experiencing homelessness, healthcare services and patient experience, primary research, published in English from 2010. Qualitative papers and findings were extracted and synthesized against a modified framework based on the National Institute for Health and Care Excellence guidelines for care for people experiencing homelessness, the Institute of Medicine Framework and Lachman’s multidimensional quality model. People with lived experience of homelessness were employed as part of the research team.

Thirty-two studies were included. Of these, 22 were qualitative, seven quantitative and three mixed methods, from the United States of America ( n  = 17), United Kingdom ( n  = 5), Australia ( n  = 5) and Canada ( n  = 4). Health services ranged from primary healthcare to outpatient management, acute care, emergency care and hospital based healthcare. In qualitative papers, the domains of ‘accessible and timely’, ‘person-centred’, and values of ‘dignity and respect’ and ‘kindness with compassion’ were most prevalent. Among the three patient experience surveys identified, ‘accessible and timely’ and ‘person-centred’ were the most frequent domains. The least frequently highlighted domains and values were ‘equitable’ and ‘holistic’. No questions addressed the ‘safety’ domain.

Conclusions

The Primary Care Quality-Homeless questionnaire best reflected the priorities for healthcare provision that were highlighted in the qualitative studies of people experiencing homelessness. The most frequently cited domains and values that people experiencing homelessness expressed as important when seeking healthcare were reflected in each of the three survey tools to varying degrees. Findings suggest that the principles of ‘Kindness and compassion’ require further emphasis when seeking feedback on healthcare experiences and the domains of ‘safety’, ‘equitable’, and ‘efficiency’ are not adequately represented in existing patient experience surveys.

Peer Review reports

Homelessness is associated with large disparities in health, including a much higher prevalence of both chronic conditions and acute illness and injury [ 1 , 2 , 3 ]. This perpetuates disproportionate rates of unplanned hospital use [ 4 ] and a three-decade gap in life expectancy [ 5 , 6 ]. Despite significant health needs, people experiencing homelessness (PEH) face numerous barriers to accessing health services and preventive healthcare [ 7 , 8 ] and are more likely to seek emergency or unplanned healthcare [ 4 , 9 ]. This is often at a later stage of ill health, leading to lengthy and costly hospital admissions [ 7 ]. Individual and structural factors associated with homelessness impact peoples’ capacity to attend appointments, advocate for the support they need and maintain regular contact with health providers that is necessary to improve their health and wellbeing. Among PEH, structural barriers and discrimination are ubiquitous experiences when accessing healthcare [ 8 , 10 ]. Current evidence associates the experience of stigma for PEH with the perpetuation of existing health inequalities, service avoidance, and subsequent poorer physical and mental health [ 10 , 11 , 12 ]. The anachronistic and hierarchical design of many conventional health services is counterproductive to the required trauma-informed approach that facilitates PEH or those experiencing marginalisation and vulnerability to access healthcare when they need it. It is clear that the traditional approach to designing healthcare services could be much improved if PEH were engaged in the process and their voices prioritised”.

Continual improvement of healthcare informed by patient experience is critical for all populations, particularly for PEH given the substantial health disparities and known barriers to healthcare access and engagement. In an effort to tackle health inequities for PEH, health systems must continuously monitor and improve the quality of healthcare they provide [ 8 ]. Capturing patient experience across healthcare settings is paramount to drive service improvement [ 13 ] and promote more equitable access, especially among PEH. In 2001, the Institute of Medicine (IOM) conceptualised quality principles across six dimensions for improvement (safe, effectiveness, patient-centred, timely, efficient and equitable) in an effort to raise the quality of health care [ 14 ]. Measurements of quality healthcare have previously focused heavily on access, clinical care processes, disease-specific indicators and mortality [ 15 ]. As part of contemporary healthcare delivery, patients’ experiences of healthcare are considered an indicator of the quality of care [ 15 ]. Patient experience is central to improvements in the provision of quality health care [ 13 , 14 , 16 ] and has been positively associated with patient safety and clinical effectiveness [ 13 , 17 ], higher levels of treatment adherence and less healthcare utilisation [ 13 , 17 ]. Patient experience is distinct from patient satisfaction in that it asks about the person’s experience of healthcare rather than simply whether they were satisfied or not. This experience-focused feedback provides valuable insights into the quality of care provided and is fed back to providers [ 16 ]. Experiences may differ according to the vulnerability of population groups and patient expectations [ 16 ]. Surveys and reports on patient experience provide a means of intrinsically evaluating and measuring aspects of care quality from the patient’s perspective, principally offering healthcare services an opportunity to capture and appraise ‘patient-centred care’ as a domain of quality [ 14 , 15 ]. Patient-centred care is key to the provision of quality health care [ 17 ] and has been highlighted as a priority for homeless healthcare [ 8 ].

The aim of this scoping review was to examine the areas of patient experience that are most frequently reported by PEH when seeking healthcare, and how the patient experience for people experiencing homelessness is represented and discussed in the literature and what deficits exist. A secondary objective of this review is to understand what surveys, or components of surveys, are being used to ask about patient experience for PEH.

Study context and rationale

The study was undertaken in Australia to inform the development of evidence-based strategies for homeless health services. In Australia, the number of PEH is rising [ 18 ]. In 2021, there were over 122,000 estimated PEH on any given night, an increase of more than five percent over five years [ 18 ]. Existing structured patient-reported experience survey methods have limited applicability for vulnerable populations in Australian hospitals [ 19 ]. For example, the Australian Hospital Patient Experience Question Set (AHPEQS) [ 20 ], does not adequately report the perspectives of people with low health literacy – a population that is over-represented among PEH [ 21 ]. Furthermore, patient experience measures in Australian Primary Healthcare (PHC) settings are not well established, nor standardised [ 22 ] and therefore little is known about the accessibility or experiences of these services for PEH. The impetus for this study was thus to identify the ways in which patient experiences of healthcare for PEH has been measured or captured in the international literature to inform the development of homeless healthcare services at the organisation.

Search strategy

A scoping review was undertaken to explore the broad research aim reported here using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) [ 23 ]. The search strategy was identified and refined by the authorship team, comprising health service managers, academics, people with lived experience of homelessness and clinicians, through an iterative process. Two of the authors had significant experience in providing healthcare to PEH, and three were experienced researchers in homeless health. A librarian was engaged to assist with the initial identification of search terms. The PICO framework was used to develop the search terms and eligibility criteria, as shown in Table  1 . The intervention of interest was patient experience for PEH when seeking and receiving healthcare.

Three preliminary searches were conducted to identify and test search terms. The final search terms were as follows: Patient reported outcome measures OR patient outcome assessment OR patient satisfaction; Health facilities OR health services OR quality of healthcare OR patients OR (health* or hospital* or patient* or outpatient* or emergency department*.ti,ab,kw. ) Health services accessibility OR access*.ti,ab,kw. Searches were grouped with the relevant keyword terms of (patient* or outpatient* or inpatient*) OR (consumer* or client* or adult* or people*) and matched with a set of adjectives with a defined adjacency of two in an effort to capture patient experience. The adjectives utilised were experience* or reported* or perspective* or perceive* or feedback* or complaint* or view* or voice* or preference* or satisfaction* or insight*.ti,ab,kw.

The final search was conducted on 2 February 2024 across the following databases: Medical Literature Analysis and Retrieval System Online (MEDLINE), Excerpta Medica Database (Embase), American Psychological Association PsychINFO and Current Index to Nursing and Allied Health Literature (Cinahl). The final search strategy and terms adapted for each database are available (See Additional file 1 ).

All search results were exported to EndNote (X9.3.3, Clarivate) and uploaded to the online systematic review collaboration software Covidence (Veritas Health Innovation, Melbourne, Australia) (Available at www.covidence.org ). Duplicates were automatically discarded. The titles and abstracts were screened independently by two authors. Conflicts were resolved by a third author. Screening of full-text papers was conducted as described above. To ensure alignment with PHC and hospital services, recency of reported experience and the Australian healthcare system, articles focusing on specialised health services/diseases, accessibility, years 2008/2009, and non-OECD countries were excluded. Systematic reviews that were identified during the screening process were reviewed for any eligible references.

Data items and extraction

Data extraction occurred through three phases. In Phase 1, the primary author extracted the following core characteristics from included papers: author, year, country, title, study design, objective, population, setting, exposure (inclusive of type of health service) and patient experience measure. To ensure the accuracy of this process, an independent review of the extraction was undertaken by two authors.

In Phase 2, the authorship team sought a framework to meaningfully extract and then code the qualitative patient experience data from the included studies and three were identified: the National Institute for Health and Care Excellence (NICE) guidelines for integrated health and social care for people experiencing homelessness [ 24 ], the Institute of Medicine (IOM) Framework for Health Care Quality [ 25 ], and Lachman’s multidimensional quality model [ 26 ]. The NICE guidelines, developed in the United Kingdom, are a comprehensive resource for working with PEH. The IOM framework is a well-established quality framework used in healthcare to align policy and practice. The IOM domains are a set of principles that are used to guide and improve the quality of healthcare delivery. Lachman’s quality framework builds on the existing IOM principles, offering a new and novel means of assessing quality in healthcare. These three frameworks were modified by removing any overlap to form one extraction framework. The authors added the domain of ‘communication’ to address an obvious deficit in existing frameworks as identified in the NICE guidelines [ 24 ] and recent literature [ 27 ]. See Tables 2 and 3 for established definitions.

The findings of the included papers were extracted against the modified framework by six authors (JPM, JH, CD, LW, SV, JC) simultaneously over three meetings. In some instances, the patient-reported outcomes overlapped between the two domains, perhaps indicating the complexity and subjectivity of patient-reported experiences. Final decisions were made by two authors (JM, CD).

In Phase 3, data from quantitative studies that used a survey to measure patient experience were extracted. Two surveys were excluded from the analysis because they did not have patient experience measures [ 28 , 29 ]. The following data points were extracted from patient experience surveys: 1) survey name, 2) authors utilising survey, 3) number of survey items 4) number of domains (referred to as scales hereafter to ensure differentiation from the term used in the extraction framework), 5) survey setting, 6) survey questions 7) assignment of survey questions to IOM domains and core values. Data were grouped together for surveys appearing in multiple articles. Data points were extracted directly from articles with the exception of data point 7 which was completed by reviewers (See Additional file 2 ). Four authors individually analysed each survey question and assigned a primary domain or core value to each. Responses were reviewed by all authors, and any disagreements were discussed and resolved through a consensus vote.

Study selection

One thousand eight hundred thirty-eight records were identified through the database searches, ultimately thirty-two studies were included in this scoping review. Details of the screening process are shown in Fig.  1 .

PRISMA flow diagram

Study characteristics

Of the 32 included studies, 22 were qualitative, seven were quantitative and three were mixed-method study designs (see Tables 4 , 5 and 6 ). Seventeen studies were from the United States of America (US), five from the United Kingdom (UK), five from Australia and four from Canada. Seventeen studies examined the provision of primary health care, with the remaining studies examining outpatient case management [ 30 ], acute care [ 28 ], emergency care [ 31 ], and hospital-based healthcare [ 29 , 32 ]. Twelve studies did not define a specific health service context and instead reported information on general patient experiences engaging with any area of health services. The tools utilised across the studies included interviews ( n  = 20), focus groups [ 29 , 31 , 33 , 34 , 35 , 36 ] ( n  = 7), surveys [ 32 , 37 , 38 , 39 , 40 , 41 , 42 , 43 ] ( n  = 8), and qualitative ranking exercise [ 44 ] ( n  = 1) to facilitate exploration of patient experience. The qualitative ranking exercise asked PEH and experts to prioritise 16 aspects of PHC.

Most ( n  = 24) studies did not detail how PEH were identified. Of those that did, five studies used the International Classification of Diseases (ICD)-9 or ICD-10 code to identify PEH [ 32 , 38 , 39 , 41 , 43 ], one study used Veterans Health Administration administrative records [ 42 ], one study used clerical staff to identify PEH by accommodation status on arrival to ED [ 49 ] and one study used staff to recruit participants as per the homeless definition in the Stewart B. McKinney Homeless Assistance Act [ 57 ]. Sample sizes of PEH ranged from five [ 52 ] to 68 [ 31 ] for qualitative studies and 33 [ 32 ] to 5,766 [ 42 ] for quantitative studies. Three of the studies from the US examined homeless veterans [ 39 , 40 , 41 ].

Qualitative study results

This section describes firstly the results from the 24 qualitative studies reviewed including the frequency of domains and core values and key themes (Table  7 ).

The most frequent domain identified was ‘accessible and timely’, appearing across 21 of the 24 included articles. Accessible and timely incorporates timeliness and access to care, the availability and flexibility of services, and geographic and financial accessibility. The most common patient experiences reported within this domain were timeliness of treatment [ 31 , 33 , 34 , 35 , 36 , 59 ], flexibility and convenience of services [ 45 , 46 , 51 , 56 ] (especially those offering co-located [ 46 , 53 , 54 , 55 ] or drop-in services [ 34 , 45 , 53 , 56 , 59 ]), the physical and organisational environment [ 46 ], and the location of services [ 33 , 34 , 53 , 54 , 55 ].

The domain of ‘person-centred’ was cited in 18 of the qualitative articles. Person-centred care incorporates the diverse experiences of individuals and their specific needs and priorities. Repeatedly, participants valued services that recognised the complexities relating to homelessness and which tailored services to meet their needs [ 33 , 34 , 52 , 53 ]. PEH greatly appreciated the social capital gained from health services, in particular positive social interaction, shared norms and decreased feelings of isolation [ 30 , 46 , 53 ]. Participants described experiences of institutional practices inconsistent with patient-centred care [ 31 , 51 , 54 ], rushed treatment [ 35 , 45 , 56 ] and a lack of awareness of PEH and the complexity of their healthcare needs [ 28 , 29 , 45 ].

The domain of ‘Safety’ encompassed physical and psychological safety, trauma-informed care and health accountability, and was raised in 17 of the 23 qualitative articles. Safety for PEH was most often discussed in relation to the physical environment of health services [ 46 , 53 ], discharge practices [ 28 , 31 , 53 ] and rapport with healthcare personnel [ 30 , 54 , 59 ]. However, cases of physical assault by security personnel [ 36 ], mechanical restraint [ 31 ], and stigma from health professionals had a negative impact on their willingness to access services [ 33 , 45 , 52 ]. While accountability was considered an important characteristic [ 44 ], in only one paper did PEH expressed concerns that health services were not accountable [ 29 ].

The ‘equitable’ refers to care being fair and impartial regardless of individual traits or circumstances, and was domain identified in 16 of the articles reviewed. Examples of equity arose most commonly regarding prejudicial care [ 29 , 31 , 33 , 48 , 51 , 52 , 55 , 56 , 58 ] and healthcare service exclusions [ 29 , 45 , 49 , 50 ], with one example reported describing a possible violation of the Emergency Medical Treatment and Labor Act [ 50 ].

‘Efficient’ appeared in 14 articles, referring predominantly to the navigation and coordination of services across providers and settings. A common issue raised was the struggle PEH experienced navigating healthcare systems [ 30 , 33 , 34 , 45 , 50 , 52 , 58 ]. Instances varied from difficulty understanding health systems [ 45 , 52 , 58 ] to the inherent complexity of referral systems [ 50 ] and paperwork [ 58 ]. A lack of healthcare insurance also exacerbated difficulties with service navigation in a US-based paper [ 52 ]. Case workers or navigators who could help facilitate the navigation of services were seen as critical enablers [ 30 , 33 , 34 , 36 , 52 ]. In circumstances where PEH accessed ‘navigational aids’, greater usage and higher levels of satisfaction with health services were reported [ 52 ]. Although in a paper by Steward (2016), coordination ranked as one of the four most important characteristics of homeless healthcare service provision [ 44 ], multiple negative accounts were reported describing episodes of fragmented care [ 35 , 36 ], wasted time [ 33 ], service gaps [ 31 ], a lack of coordination between services [ 28 ] and problematic relationships with interdisciplinary teams [ 33 ]. In one study, 44% of PEH delaying healthcare attributed this to previous experiences and concerns that they would not receive appropriate healthcare [ 28 ]. Positive experiences recounted the arrangement of hospital admissions [ 53 ], seamless system navigation [ 31 ], centralised care coordination that reduced the need for ED presentations [ 33 ], and effective coordination and timely referrals that alleviated service user stress [ 34 ].

The ‘effective’ domain that pertains to care following evidence-based guidelines and standard operating procedures was the least frequently articulated domain in the qualitative papers reviewed (10 citations), with Steward et al. (2016), independently reporting that PEH highly prioritised ‘evidence-based decision making’ [ 44 ]. On the few occasions the effective domain was highlighted in the literature, it involved treatment based on individual biases and stereotypes [ 33 , 50 ], inconsistent discharge practices [ 45 ] and pain management regimens [ 35 , 36 ].

Core values

The core values of ‘dignity and respect’ and ‘kindness with compassion’ were detected in 20 articles. Key features of these core values included the acceptance and respect of all views in decision-making, warm and welcoming clinicians and the provision of empathetic and non-judgmental care. For PEH, respectful [ 46 , 49 , 51 , 53 , 54 , 55 ] and non-judgmental care was important [ 29 , 47 , 49 , 51 , 53 , 56 , 59 ]. Positive experiences were characterised by welcoming and approachable staff [ 29 , 34 , 52 , 59 ], human connection [ 54 ], being known by name [ 46 ], rapport and trust [ 29 , 54 , 59 ], compassionate care [ 29 ], the preservation of anonymity [ 51 ] and confidentiality [ 55 ], and recovery-oriented approaches that led them to feel included in society [ 54 ]. Yet there were occasions where PEH perceived health professionals as uncaring [ 31 ], demeaning [ 57 ], dismissive [ 35 , 36 , 50 ] and judgemental [ 31 , 35 , 50 , 52 , 56 , 57 ]. Many PEH reported experiences of stigmatisation when accessing healthcare [ 29 , 31 , 45 , 53 , 55 , 56 , 59 ]. Furthermore, some PEH held concerns of prejudicial information in medical records influencing the provision of medical care [ 35 , 36 , 55 ]. Negative experiences created power dynamics [ 33 ], strained relationships [ 51 ], adversely impacted care [ 33 ], were associated with a loss of self-confidence [ 56 ], and contributed to a reluctance to engage healthcare services in the future [ 29 , 31 , 33 , 45 , 51 , 52 , 56 ]. In contrast, positive experiences encouraged health-seeking behaviour and service engagement [ 34 , 45 ], upheld dignity [ 29 ] and decreased feelings of shame among PEH [ 30 ].

‘Partnership and co-production’ was raised in 17 of the articles reviewed. This value refers to how PEH can be engaged and active partners in designing healthcare and the delivery of services. Integral to this core value is patients at the centre of control. PEH placed high value on decision-making [ 55 ]; they wanted to set their own agendas, be asked what they needed, and be allowed to decide for themselves [ 54 ]. In one circumstance, PEH perceived that they were full partners with a sense of control over their care, even reporting freedom and an increased choice to change health providers [ 33 ]. However, the characteristic of patients as a ‘source of control’ in PHC was ranked relatively low (10 out of 16) [ 44 ], and some patients were ambivalent about control when discussing pain and controlled substances [ 55 ]. PEH appreciated continuity of care and being able to see the same providers consistently [ 55 , 59 ]. Although care could be inconsistent or suboptimal [ 45 ], overly prescriptive [ 52 ], or constrained by distrust in healthcare professionals [ 29 , 46 , 52 , 53 ], there was acknowledgement that experiences and engagement improved with time and upon building therapeutic relationships. [ 35 , 36 , 46 , 53 , 56 ]

The ‘Holistic’ core value was identified in 16 articles. It refers to care that is integrated and addresses physical, emotional, social, spiritual and mental wellbeing. Several articles highlighted failures to provide holistic care [ 31 , 33 , 45 , 49 ]. In one article, PEH reported a lack of inquiry into their housing status, with only 44% being assessed during an acute care episode [ 28 ]. On the contrary some publications demonstrated endeavours to provide holistic care [ 30 , 46 ] and the positive effects of treating patients as individuals with personal needs and goals [ 34 ].

The core value of ‘communication’ incorporates communication methods, information sharing and awareness of services and was raised in 14 articles. On several occasions, it was apparent that PEH were unaware of their health entitlements and existing outreach, after-hours or primary health care services due to a lack of signposting and communication [ 35 , 45 , 49 , 51 , 54 , 55 ]. This insufficiency in communication extended beyond the realm of access and navigation of services and into treatment care and follow-up, and PEH reported circumstances where communication with kin did not occur [ 31 ], unclear post discharge management plans [ 53 ] and a system-level reliance on postal and telecommunication methods that was unsuitable for this cohort [ 55 ]. PEH ranked ‘shared knowledge and the free flow of information’ in the top 25th percentile of important characteristics of homeless care [ 44 ]. People experiencing homelessness called for greater communication between hospitals and shelters during discharge in an effort to improve the coordination of care [ 28 ].

Quantitative study results

The following section reports on the characteristics, settings and frequency at which domains and core values were reported in surveys across the quantitative papers.

Ten articles were initially identified with survey components [ 28 , 29 , 32 , 37 , 38 , 39 , 40 , 41 , 42 , 43 ], however two were excluded from the analysis, as the surveys contained no patient experience questions [ 28 , 29 ]. The remaining eight articles utilised an original or adaptation of one of three patient experience surveys [ 32 , 37 , 38 , 39 , 40 , 41 , 42 , 43 ]. Surveys ranged from having 15 items to 33 items and four to seven scales. Across different scales and their respective questions, the frequency of domains and values identified and authenticated ranged from one to seven, and of the 16 scales reviewed, only six scales were identified to exclusively reflect a single domain or value.

The Primary Care Quality-Homeless (PCQ-H) questionnaire was the most frequent survey tool, appearing in five articles. The Consumer Assessment of Healthcare Providers and Systems Survey (CAHPS) was utilised twice, and one study utilised a modified version of the Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS) survey. Each of these three survey tools are discussed below in additional detail. Across all three patient experience surveys, the majority of questions pertained to the ‘person-centred’ and ‘accessible and timely’ domains, followed by the core values of ‘dignity and respect’ and ‘communication’. Together, these four domains and values constitute 67% of survey questions. The fewest questions were dedicated to the domains of ‘effective’ ‘equitable’, ‘holistic’ and ‘partnership and co-production’. The least frequently highlighted domains and values were ‘equitable’ and ‘holistic’, with one out of three surveys detailing corresponding questions. No questions addressed the ‘safety’ domain (See Table 8 ).

Primary Care Quality-Homeless (PCQ-H) questionnaire

The PCQ-H was the most comprehensive survey; it covered all domains and values with the exception of ‘safety’ and ‘holistic’. General constructs of the PCQ-H survey were based on IOM publications [ 25 , 63 ], a card sort exercise [ 44 ] and qualitative interviews and focus groups with PEH and homeless care provider experts [ 60 ]. The PCQ-H is advantageous, as it is the only survey reviewed that has been specifically developed for and that has had its validity and reliability determined for PEH [ 60 ]. This is important because the concerns and needs of PEH differ from those of the general population and may be overlooked in standard survey instruments. The PCQ-H has been specifically designed to account for low literacy comprehension (seventh grade reading level) to ensure understandability [ 60 ]. The majority of authors utilised the PCQ-H in its entirety with the exception of Jones (2021), who only utilised the 11-item Access/Coordination scale from the PCQ-H.

Consumer Assessment of Healthcare Providers and Systems Clinician and Group (CG-CAHPS)

The CG-CAHPS survey questions identified eight of the 11 IOM domains and core values, with the exception of ‘safety’, ‘effective’ and ‘equitable’. The CAHPS surveys were originally designed to compare service providers and assist consumers in judging health plans [ 64 , 65 ]; however, the CG-CAHPS was initially developed to measure patient experiences in ambulatory care [ 61 ]. Behl-Chada, (2017) and Jones, (2017) both utilised modified surveys based on version 2.0 of the CG-CAHPS, with supplementary Patient-Centered Medical Home (PCMH) items to allow for a more comprehensive assessment of PHC and patient experience. The psychometric properties of the CG-CAHPS have been reported to be acceptable [ 61 ].

Modified Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS) survey

The HCAHPS survey covered just over half of the IOM domains and core values. The standard HCAHPS survey is typically 27 items; however, Vellozzi-Averhoff utilised fewer items in their study [ 32 ]. The HCAHPS survey is used among hospitals for inpatient care, which allows for cross-industry service quality comparison. A study on the psychometric properties of HCAHPS raised concerns about the consistency, reliability and validity of multiple-item measures for service quality [ 66 ]. Furthermore, the sampling frame utilised for the development of HCAHPS excluded patients who were not discharged ‘home’ based on the premise that these patients were less likely to respond to surveys [ 67 ]. As a result, differing responses from PEH may not be reflected within the existing psychometric properties of HCAHPS.

Summary of results for domains and core values

‘Accessible and timely’ and ‘person-centred’ domains were identified in the literature as the most prominent domain 20 and 18 times in the literature respectively. Moreover in two out of the three patient experience surveys, these two domains were more commonly identified in survey questions. The core values of ‘dignity and respect’, ‘partnership and co-production’ and ‘communication’ were highlighted between 14 and 20 times and were reported across all three surveys. ‘Efficient’ and ‘kindness with compassion’ were highlighted 14 and 20 times, respectively, and both were reported in two surveys. The ‘effective’ domain was described the least in the literature (10 times) but was identified in two surveys. The ‘equitable’ and ‘holistic’ domains were described in 15 articles each; however, ‘equitable’ only appeared in the PCQ-H survey, and ‘holistic’ only appeared in the CAHPS survey. The ‘safety’ domain was cited in 17 articles; however, no survey questions addressed the safety domain.

The most frequent domains and core values that emerged upon review of the literature for PEH healthcare experiences were ‘accessible and timely’, ‘person-centred’, ‘dignity and respect’ and ‘kindness with compassion’. Of the three existing patient experience surveys identified in this field, the PCQ-H most accurately encompasses the findings voiced in the qualitative literature. Less emphasis was found in the patient experience data on ‘communication’, ‘effective’ and ‘efficient’ than seen in the surveys.

Accessible and timely care

‘Accessible and timely’ care was the domain raised most throughout the literature, and the corresponding survey questions were plentiful and comprehensive. Quantitative survey questions positively encompass the preferences of PEH, giving consideration to wait times, flexibility, convenience and location of services. Historically, PEH have reported significant barriers to accessing care [ 68 ], with accessibility highlighted as a top priority by both patients and providers [ 44 ]. Given the competing priorities of PEH to meet physiological needs such as shelter and food, it is understandable that health needs are best met in an opportunistic fashion.

Kindness, compassion, dignity and respect, and person-centred care

Provision of ‘person-centred’ care was highlighted across both types of studies and is considered fundamental to the provision of quality care; it is associated with improved health outcomes and healthcare utilisation [ 69 ]. In the literature, PEH consistently valued healthcare that acknowledged homeless-specific needs and tailored services. Perhaps the most fitting question measuring patient experience for ‘person-centred’ care was: ‘My primary care provider makes sure health care decisions fit with the other challenges in my life’ from the PCQ-H.

‘Kindness with compassion’ and ‘dignity and respect’ were the most common values identified in qualitative articles and were moderately represented in patient experience surveys. These core values are central to patient-centred care frameworks [ 24 , 70 ]. Patient experience of health care services are impacted by a multitude of factors including the behaviours and attitudes of healthcare and professional staff [ 19 ]. Respect is considered an essential part of building trusting relationships between PEH and providers [ 71 ]. Whilst, kindness with compassion embodied as non-judgemental and empathetic communication can enhance service engagement among PEH [ 71 ].

Survey questions relating to the value ‘dignity and respect’ were aimed at authenticating the provision of treatment with courtesy and respect, as well as addressing concerns of anonymity and confidentiality. Whereas survey questions relating to the value ‘kindness and compassion’ affirmed the provision of non-judgemental care non-directly, they did not explicitly ask to what extent were clinicians and non-clinicians empathetic, non-judgmental, warm and welcoming. Questions addressing these values may be less common in surveys due to an inherent difficulty related to quantifying, assessing and measuring abstract ideas such as kindness, respect and dignity.

Safety, choice, control and holistic care

There is extensive literature documenting the clear relationship between exposure to trauma, poor mental health, and chronic homelessness [ 72 ]. For people who have experienced significant trauma, a sense of choice and control over their healthcare is important [ 73 ]. In order to engage in effective and meaningful healthcare, individuals must connect and feel safe in the therapeutic relationship.

Primary care is often best placed to develop safe relationships and access community-based services. The ‘safety’ domain was cited in 17 articles; however, no patient experience survey questions explicitly addressed whether providers made them feel safe. Physical and psychological safety was identified by PEH as being important to patient experience. Of note four articles emphasised the importance of trauma-informed care [ 29 , 35 , 46 , 52 ] and one article raised cultural safety [ 29 ]. Although these topics were highlighted by their respective authors and not raised categorically by PEH themselves.

Within the ‘partnership and coproduction’ value, it is clear that PEH value autonomy around decision-making. Yet the survey questions pertaining to this value allude more so to ‘consultation’ in designing health as opposed to patients as a source of control. There were no survey questions directly related to the strength of therapeutic relationships with healthcare professionals, although some questions assigned to the person-centred domain do reflect the quality of patient-provider relationships. Authors, including researchers with lived experience; observed the notable absence of cultural safety and gender sensitivity in the articles. and gender minorities are disproportionately represented in youth homelessness [ 74 , 75 , 76 ] and experience higher rates of trauma [ 75 ]. The same minority groups are subject to increased safety risks, and report lower levels of perceived safety when entering shelters and services [ 75 ]. Cultural safety is an indigenous-led model of care that was born in New Zealand [ 77 ]. There are varying interpretations of cultural safety; however, broadly speaking, definitions encompass power differentials between patient and provider and subsequent associated barriers to clinical effectiveness arising from said power differentials [ 78 ]. Distinctive from cultural competency, cultural safety focuses and reflects upon the culture of the clinician, the provision of care, and the healthcare environment [ 78 ]. Cultural safety is an important consideration when examining patient experience of PEH, as indigenous populations are overrepresented in homelessness. In 2021, one in five (20.4%) PEH in Australia identified as Aboriginal and or Torres Strait Islander [ 18 ]. Similarly, Indigenous and First Nations people from the United States, Canada and New Zealand are overrepresented among homeless populations [ 79 , 80 , 81 ]. Cultural safety is intimately linked to health equity and notions of power [ 78 ]. For this reason, it is anticipated there would be some cross-over between the safety and equity domains. Despite this potential for overlap, there were no clear examples of discrimination or racism against indigenous PEH cited under equity, and only one article detailed concerns about prejudicial care specific to ethnicity [ 51 ]. Similarly, none of the studies reviewed recounted patient experiences specific to sexual and gender minority groups. Although, several articles acknowledged potential limitations of their studies due to gender [ 28 , 34 , 35 , 51 ].

An absence of coverage on cultural safety could be reflective in that only a few studies were from Australia and Canada, where cultural safety has gained greater traction within healthcare. Furthermore, patient experience extracted from qualitative articles relating to the ‘safety’ domain may in fact be underrepresented or incomplete. It is possible that safety has not been captured in its entirety, as patients were not explicitly asked about ‘safety’ or these sentiments were captured via the ‘kindness with compassion’ value, which includes warm and approachable clinicians and empathetic and non-judgemental care. Moreover, there is an element of safety that could be assumed or interpreted via other statements from PEH or that is postulated as being built into existing health structures and models of care. Therefore, the inclusion of specific survey questions focused on the ‘safety’ domain may offer a more accurate portrayal of safety for PEH hereafter. Primary experience surveys did not routinely include questions addressing ‘safety’. The exploration of safety as a domain identified by PEH and healthcare providers is a clear gap in the literature that needs to be explored in future studies to develop a shared understanding of this important concept.

Safety, trust, choice, control and collaboration in care are important elements of trauma-informed care [ 82 ]. As a result, trauma-informed care crosses over into the ‘holistic’, ‘partnership and co-production’ and ‘kindness with compassion’ values. Consideration should be given to the inclusion of survey questions to measure safety and trauma informed care. (e.g., do you feel safe when attending healthcare services, considering both your physical well-being and emotional well-being?, how safe and supported do you feel in the healthcare setting in terms of addressing your individual needs and experiences?).

Survey questions that were exclusively assigned to the ‘holistic’ value were found to be predominantly focused on mental health, and with the exception of one question enquiring about alcohol and substance use, failed to ask patients more broadly about their wellbeing and factors affecting their health. Albeit only one of the three surveys was specifically designed for PEH, none of the surveys had questions pertaining to housing, which for PEH is a critical component to stability, security and health.

Effective and equitable care

The literature suggests that effectiveness is more likely to be recognised by health providers than by services users [ 83 ] and may in part explain why the ‘effective’ domain was infrequently cited. Paucity in articles may be due to scepticism or a lack of relevance to PEH, as evidence-based practice has previously been perceived by PEH as an authoritative top-down approach that reinforces existing modalities of care [ 84 ]. Despite the necessity of lived experience to shape the application and interpretation of evidence-based practice, lived experience perspectives and expertise are frequently omitted or poorly utilised [ 84 ]. The ‘effective’ domain tended to appear in the literature due to grievances with a lack of adherence to evidence-based guidelines and standard operating procedures and therefore may also reflect concerns about inequity as PEH received treatments based on biases and stereotypes.

The ‘equitable’ domain was not commonly investigated, but it is important because it holds the potential to quell concerns of PEH and expose incidences of prejudicial care, lesser care and or service exclusions. Example questions from the PCQ-H include (Staff at this place treat some patients worse if they think that they have addiction issues) and (At this place, I have sometimes not gotten care because I cannot pay) . A more general question that purely focuses on prejudicial care may be of benefit due to its broader applicability (e.g., in your healthcare experiences, to what extent do you feel that care is provided fairly and without bias, regardless of your individual traits or circumstances?). Potential future survey questions could include whether or not PEH felt their care adhered to required guidelines and standards.

Efficiency and communication

Despite a common theme pertaining to PEH struggling with the navigation of health care services, only one of the five efficient survey questions somewhat reflected this concern: (My primary care provider helps to reduce the hassles when I am referred to other services). No survey questions clearly enquired as to whether PEH received assistance or experienced difficulty navigating services. The remaining ‘efficient’ questions focused on the coordination of services and patient follow-up. The primary discourse for the core value of ‘communication’ related to PEH’s awareness of services and health entitlements. Yet only one survey question clearly represented this notion. Rather, the majority of ‘communication’ survey questions relate to the quality of communication provided by health professionals and whether it was understandable to the individual.

Future directions and implications for practice

In our analysis, we have made an effort to integrate findings from both qualitative research and surveys. We recognise the intrinsic value, richness and depth provided by qualitative research, which is insightful and more comprehensive than survey findings alone. Given our setting of a hospital service, we hope to gather information that can contribute to the development of patient experience measures, ultimately enhancing the healthcare provided to PEH. To ensure health services are capturing the experience of PEH accurately, surveys and measures of patient experience must be tailored to reflect what matters to PEH when accessing healthcare. For healthcare services that care for PEH, utilising patient experience measures that are adjusted to reflect the complexity of the population increases the acceptability of results and aids fairer comparison across practices [ 16 ].

Generic surveys utilised on this cohort are incomplete and inadequately inform patient experience, at times overlooking broader notions of health, and the underlying social determinants of health (such as housing) that may take precedence over outright health needs. Existing surveys do not adequately portray and incorporate all the IOM domains and core values, this is most apparent for ‘safety’, ‘equitable’, and ‘efficient’. Further research is needed to explore whether surveys are asking the correct questions to inform patient experience for PEH. Furthermore, it is possible that themes identified by PEH may also hold value for other marginalised or vulnerable groups who experience healthcare inequities and subsequently poorer health outcomes. In the interests of improving equitable care across healthcare services, themes around personal interactions, as identified in this paper, should be better considered. Further research is needed on whether sufficient patient experience data may be collected via the addition of a subset of questions specific to homelessness to an existing generic survey. Patient experience is complex and multifaceted, and positive measurements in one domain or value may not always translate to quality in other domains or values. Surveys that ask only binary or close-ended responses may fail to capture key patient perspectives and contextual information that is important to PEH [ 85 ].

The PCQ-H was most commonly utilised survey tool for PEH in primary research. It was developed with extensive involvement of PEH and has evidence of scientific rigour [ 60 ]. Potential further research could include the adaptation and validation of the PCQ-H in other healthcare settings (e.g., hospital based care). This study supports the establishment of the PCQ-H survey as the current gold standard within the primary healthcare setting for PEH. This is indicated by its reflection most closely of themes identified in the qualitative literature.

Challenges exist in routinely collecting patient experience measures in healthcare settings [ 86 , 87 ]. Whilst existing studies do not specifically examine PEH, the completion of patient experience measures is impacted by social determinant of health [ 87 ], and barriers are transferable and applicable to PEH; such as language proficiency, health literacy, technology literacy, cognitive functioning and time constraints [ 86 ]. For PEH additional barriers to survey engagement may include: stigma, poor mental health, substance or alcohol abuse, competing priorities, the transient nature of homelessness and high rates of discharging from health services against medical advice. Co-design projects and tailored approaches are required to overcome barriers and optimise the collection of patient experience data [ 88 ], in turn assessing and exploring how healthcare organisations can best respond to the findings so that healthcare for PEH can be improved. Possible directions for future research include developing the findings, such as incorporating a Delphi design and further validation studies to refine survey recommendations for these broader healthcare services.

Strengths and limitations

A strength of this study was the involvement of people with lived experience of homelessness in the design, analysis and interpretation of the papers. The inclusion of people with lived experience provided contextual understanding to the topic, ensured relevance and enhanced authenticity and validity of the study. A further strength of this paper was that it includes both qualitative and quantitative research papers, this allowed for a more comprehensive understanding of the topic and a triangulation of findings to address the scoping aim and secondary objectives. The degree of detail possible by using the extended domains framework assisted in framing the studies in domains that were especially relevant for PEH. This paper also utilised rigorous methodology by having studies reviewed by multiple researchers to reach consensus on domains and core values.

A limitation of this study was the exclusion of specialised health services or disease-focused articles, as there may have been relevant findings from these articles that were applicable to other healthcare settings and PEH. There is a possibility that in determining and allocating a singular primary domain or core value to each survey question, that survey data was simplified and lost some of its breadth. Although the research team undertook a rigorous technique for coding the domains and values, there were instances where more than one domain or value was found to be applicable despite agreed upon definitions. The majority of questions were allocated with consensus.

A significant limitation is that the majority of studies were from the US and four other OECD countries and may not extrapolate to other settings. However, the findings involving domains and core values have the potential to be interpreted universally. OECD countries were chosen so as the findings could be applied to healthcare service development for PEH at the main study site. Due to the large number of articles, grey literature on patient experience was not reviewed. Grey literature may have offered additional value to our study. Lastly, this study was also limited in that exploration of patient experience was confined to existing published research, it is possible that there are elements of patient experience for PEH that are not adequately reflected in the published literature.

When measures patient experience for PEH, questions pertaining to how the provider treats them, including if they felt respected, if they were shown kindness and compassion, if they were made to feel safe, and if they felt listened to need to be captured alongside how effective and accessible treatment was. This study identifies that ‘kindness and compassion’ questions should be further emphasised when seeking feedback on healthcare experiences from PEH. The domains of ‘safety’, ‘equitable’, and ‘efficiency’ are not adequately represented in existing patient experience surveys.

The PCQ-H was the survey that best reflected the priorities in healthcare provision identified by qualitative analysis and may be suitable to extend to other healthcare settings. Of note, although safety is identified as being a priority for PEH, this was not identified in any of the surveys.

Communication was not a feature of themes recognised as important in qualitative studies, but elements of communication may have been included in other domains. The literature shows that many of the most frequently cited domains and values that PEH expressed to be most important when seeking healthcare were reflected in the three identified survey tools used to varying affect.

Availability of data and materials

The datasets used and/or analysed during the current study are available from the corresponding author on reasonable request.

Abbreviations

Patient-centred medical home

People experiencing homelessness

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Acknowledgements

The authors would like to express their gratitude and acknowledge Helen Wilding for her assistance with this project.

A grant from St Vincent’s Health Australia’s Inclusive Health Research Award Fund was received to the value of $50,000. The grant is to fund the research component of a broader project, which is to design and implement an Outcomes Framework for people with lived experience of homelessness for St Vincent’s Health services.

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CD and JH conceived the study. JPM determined the search strategy and methodology under the guidance of JH, CD, SV, JC, KW and LW. Authors JPM, JH, CD, SV, HC, KR and LW analysed the data. JPM was the lead author with substantial contribution and editing from LW, JH, ML, CD, SV, JC and LW in all sections. All authors read and approved the final manuscript. Authors MS and JM provided a lived experience perspective to assist in study design, analysis and interpretation of data throughout.

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Miller, JP., Hutton, J., Doherty, C. et al. A scoping review examining patient experience and what matters to people experiencing homelessness when seeking healthcare. BMC Health Serv Res 24 , 492 (2024). https://doi.org/10.1186/s12913-024-10971-8

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Distinct experiences and care needs of advanced cancer patients with good ECOG performance status: a qualitative phenomenological study

• Ping Chen 1 , 3   na1 ,
• Mingfu Ding 2   na1 ,
• Changlin Li 3 ,
• Yujuan Long 4 ,
• Deng Pan 5 ,
• Taiguo Liu 3 &
• Cheng Yi 1  

BMC Palliative Care volume  23 , Article number:  102 ( 2024 ) Cite this article

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Advanced cancer patients with good Eastern Cooperative Oncology Group (ECOG) performance status (score 0–1) are underrepresented in current qualitative reports compared with their dying counterparts.

To explore the experiences and care needs of advanced cancer patients with good ECOG.

A qualitative phenomenological approach using semi-structured interview was employed. Data was analyzed using the Colaizzi’s method.

Setting/Participants

Purposive sample of terminal solid cancer patients on palliative care aged 18–70 years with a 0–1 ECOG score were recruited from a tertiary general hospital.

Sixteen participants were interviewed. Seven themes were generated from the transcripts, including experiencing no or mild symptoms; independence in self-care, decision-making, and financial capacity; prioritization of cancer growth suppression over symptom management; financial concerns; hope for prognosis and life; reluctance to discuss death and after-death arrangements; and use of complementary and alternative medicine (CAM) and religious coping.

Conclusions

Advanced cancer patients with good ECOG have distinct experiences and care needs from their dying counterparts. They tend to experience no or mild symptoms, demonstrate a strong sense of independence, and prioritize cancer suppression over symptom management. Financial concerns were common and impact their care-related decision-making. Though being hopeful for their prognosis and life, many are reluctant to discuss death and after-death arrangements. Many Chinese patients use herbal medicine as a CAM modality but need improved awareness of and accessibility to treatment options. Healthcare professionals and policy-makers should recognize their unique experiences and needs when tailoring care strategies and policies.

Key statements

What is already known about the topic?

• Even in their advanced stage, cancer patients with good ECOG performance status are capable of self-care and less reliant on care provided by other.

• Existing qualitative research mainly focuses on advanced cancer patients with poor ECOG, emphasizing pain management, emotional distress, and palliative care.

What this paper adds?

• Our findings reveal distinct experiences and care needs of advanced cancer patients with good ECOG performance status from their dying counterparts.

Implications for practice, theory or policy .

• Healthcare professionals should recognize and address the patient group’s distinct needs.

• Future research should further investigate their symptom trajectory, influencing factors, and care needs to fill the gap in their cancer journey.

• Policy-makers should develop tailored policies that consider good ECOG performance status.

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Introduction

Cancer is a major global public health issue, which affects millions of people around the world and in China. There were estimated 19.3 million new cancer cases and 10 million cancer deaths globally in 2020 [ 1 ]. China accounted for 24% of newly diagnosed cases and 30% of the cancer-related deaths [ 2 ]. As treatments and early detection methods continue to advance, the number of people living with cancer are on the rise, whose life expectancy is extended. For instance, the five-year survival rate for cancer patients in China rose from 30.9% in 2003–2005 to 40.5% in 2012–2015 [ 3 ], highlighting the growing population of individuals living with cancer for extended periods.

Cancer staging is crucial in clinical oncology. It provides pivotal information on the extent and spread of the disease to guide treatment decisions and prognosis [ 4 ]. Advanced-stage cancer patients, typically characterized by extensive tumor growth and metastasis, often face more aggressive treatments and poorer prognoses compared with those in an earlier stage. However, advanced cancer patients with good physical performance status, commonly measured as an Eastern Cooperative Oncology Group performance status (ECOG PS) score, are often underrepresented in the current qualitative research. Instead, their counterparts with poorer ECOG PS who are usually in the final stage of disease are the focus of current research interests, who typically experience more severe symptoms, functional decline, and higher risks of adverse events [ 5 , 6 ]. Researchers may opt not to recruit patients with good ECOG PS, who are more likely to continue working and engaging in daily activities and may be less accessible [ 7 ]. Also, this patient population may be neglected in favor of cancer patients nearing death because of limited research funding and resources [ 8 ].

In our clinical practice of palliative and hospice care, we often encounter cancer patients in the advanced stage with good ECOG PS (score 0–1). They impress us by demonstrating distinct physical and psychological experiences as well as varied care needs from those with poorer PS. This led us to hypothesize that despite the advanced stage of disease, cancer patients with good ECOG PS may have different experiences and care needs from their dying counterparts. Therefore, we devised this qualitative phenomenological study, which aimed to explore the experiences and care needs of advanced cancer patients with good ECOG PS. Our findings may shed light on some distinct characteristics of this underrepresented patient group and reveal novel areas potentially meaningful for future research. The evidence may find merit in supporting care-providers and decision-makers to more specifically tailor their strategies when caring for cancer patients in the advanced stage.

Study design

This was a phenomenological qualitative study. Semi-structured, in-depth interviews were conducted face-to-face with eligible participants to gather information about their lived experiences and care needs. The interviews continued until data saturation was achieved [ 9 ], at which point no new insights emerged from further interviews. Colaizzi’s method was employed to analyze the collected data [ 10 ].

Ethical consideration and informed consent

The study was ethically approved by the Ethics Committee of Chengdu Seventh People’s Hospital (reference number AF-SOP-09-2.1). Written informed consents were signed with all participants.

The present study took place at the Oncology Department of Chengdu Seventh People’s Hospital, a tertiary general hospital situated in Chengdu, Sichuan Province, Southwest China. As one of the national pilot centers for palliative and hospice care, this department offers both curative cancer treatments and palliative or hospice care to cancer patients across all stages of tumor progression.

Research team

Our research team consisted of 8 members, including 6 oncologists and 2 nurses. Each researcher had a minimum of 5 years of clinical experience in oncology, with at least 2 years in palliative care. Additionally, all team members were trained in phenomenological qualitative methodology. None of the researchers held religious affiliations or had any known inclined theoretical or ethical perspectives. The principal investigator underwent training in face-to-face semi-structured interview.

Participants

Participants were recruited from patients who received treatment and/or follow-up care at the Oncology Department between July and September 2022. The principal investigator screened potential participants based on the following inclusion and exclusion criteria:

Inclusion criteria: A patient should (1) be 18–70 yrs old with a stage IV cancer diagnosis of solid tumor and a life expectancy > 6 mo; (2) have an ECOG PS score of 0–1; (3) be currently undergoing palliative therapies, including but not limited to palliative chemotherapy and radiotherapy; (4) be aware of their diagnosis; (5) be able to participate in a 30 min in-depth interview; (6) possess sufficient cognitive capacity and verbal communication ability; and (7) provide consent to participate in the study and for the publication of findings.

Exclusion criteria: A patient was ineligible if they (1) were < 18 or > 70 yrs old; (2) had a non-cancer or non-solid tumor diagnosis, a tumor stage below IV, an ECOG PS score > 1, or a life expectancy < 6 mo; (3) were unaware of their diagnosis; (4) were receiving hospice or end-of-life care; (5) were physically unfit for an interview, as assessed by the interviewer; (6) had a known mental illness or exhibited insufficient cognitive and communication capacity; or (7) failed to provide consent.

Sampling and data collection

Purposive sampling was employed to select participants. The primary investigator accessed candidates’ medical records on the hospital’s electronic medical record system, screening them against the inclusion and exclusion criteria. She then approached a potential participant and made a brief casual conversation to visually assess their physical and mental status, cognitive abilities, and communication skills.

If the candidate seemed suitable for further interview, the primary investigator explained the study’s objectives and process, and inquired if they were interested in participating. After obtaining informed consent, the primary investigator either initiated the interview immediately or scheduled it for a later time, typically within the next 72 h. For those with scheduled interviews, the interviewer reassessed the participant’s status at the time of the interview. If the participant was deemed unfit by the primary investigator, the interview would be canceled and the participant excluded.

Participants were interviewed individually in a designated room, without the presence of family members. If a participant displayed signs of physical discomfort or reluctance to continue, the interview would be discontinued and any incomplete interviews discarded.

The sampling process persisted until data saturation was reached [ 9 ], at which point the interviews no longer produced new analytical information.

Semi-structured interview

The primary investigator conducted all semi-structured interviews to ensure consistency across the study. To prevent interviewer burnout and allow for timely verbatim transcription, no more than three participants were interviewed on a single day. Each interview was audio-recorded in its entirety.

Before delving into specific questions, the interviewer posed a grand tour question to guide the participant, typically phrased as “How do you feel today?” or “Could you tell me about how you feel recently?” Probing questions such as “Could you tell me more about the care/doctors/nurses?“, “Has the therapy made you feel better?“, and “What makes you think that?” were utilized to encourage participants to provide more detailed responses. The interviewer employed various techniques, such as rhetorical questioning, repetition, and response, to uncover the participants’ genuine feelings. Field notes were taken throughout the interviews to document the participants’ tone of voice, notable facial expressions, and body gestures. (Supplement 1 )

Immediately following each interview, the audio recordings and notes were cataloged. Another investigator transcribed the recordings verbatim and verified the accuracy of transcriptions within 24 h after the interview. To ensure anonymity, the records and transcriptions were de-identified, with participants assigned numerical identifiers (P1, P2, etc.) in place of personal information. All patient data, recordings, and transcriptions were maintained with strict confidentiality.

To ensure the rigor of this study, several strategies were employed. The interviewer maintained neutrality throughout the interviews by refraining from expressing personal opinions or judgments. When unclear statements or feelings arose, the primary investigator sought clarification from the participants during the interview. In cases of disagreement among researchers, the team referred back to the interview transcriptions and, if necessary, sought further clarification from the participants.

Participants and interviews

In this study, we interviewed 16 participants aged 33–64 yrs (mean age, 55.1 yrs), including 7 females. The interviews had an average duration of 17.7 min (range, 10.5–42.5 min). All participants were medically insured and diagnosed with stage IV solid tumors. Half of the participants (8/16) were asymptomatic, while the remaining experienced mild symptoms. Among the participants, 15 expressed expectations with their current treatment to suppress tumor growth, and 4 of symptomatic patients expected it to alleviate symptoms. Nine participants reported using Chinese herbal medicine (CHM) as a complement to their ongoing treatment. Two participants reported holding religious beliefs, both identifying as Christians. Detailed sociodemographic and clinical information of the participants is in Tables  1 and 2 .

Findings from interviews

We extracted seven overarching themes from the interviews, as follows:

Theme 1: experiencing no or mild symptoms

The majority of participants reported experiencing either no symptoms or only mild symptoms during the interview period, which did not substantially impact their daily lives. However, a few participants recounted instances of severe symptoms, such as debilitating pain, that hindered their ability to engage in routine daily activities.

“(I) feel fine. Almost nothing. Just a little coughing now and then.” - P7 .

“No, I feel not bad… (I) only feel more tired than before every day. Nothing else.” - P8 .

“My shoulder used to hurt really badly. I couldn’t lift my right arm… It hurt so badly that I’d rather die… Couldn’t do anything… (The pain) was relieved again after ascites extraction. Now it hurts a little some times but OK.” - P11 .

The most severe symptom was described by Participant 16, who had experienced abdominal distention, which was managed by ascites extraction:

“My belly felt very full all the time… Better after the ascites was extracted. (I) couldn’t do anything then but can take care of myself again now, at least do some of my own things now.” (Smiled) - P16 .

Theme 2: independence in self-care, decision-making, and financial capacity

The participants exhibited a strong sense of independence in multiple aspects, including self-care, care-related decision-making, and financial capability for care expenses.

Rather than being heavily dependent on family members or other informal caregivers, the majority of participants were either fully or partially self-sufficient in managing their daily living activities:

“I take care of myself. My husband helps sometimes especially when I’m hospitalized but I don’t like his cooking.” - P1 .

“I can take care of myself. They (family members) are busy working every day. I cook my meals. Easier for me to choose what I want to eat.” - P4 .

“My wife looks after me and I try to take care of my own daily living as long as I feel good enough.” - P10 .

Most participants seemed resolute in making their own decisions while having little trouble seeking input from a variety of sources:

“… I make my own decisions… My nephew works for a pharmaceutical company… He suggests me to ask if I can test only some of the gene sequencing tests…” - P1 .

In some cases, they even exhibited resistance to external interference with their decision-making, especial concerning their treatment-related decisions:

“This is my life. (I) should think for myself, whether (I) continue my treatment or stop.” - P3 .

Some participants mentioned that they paid for their treatments with their own savings and were hesitant to spend money from other family members or borrowed money for fear of becoming a burden:

“For now (I) still have enough money (for the treatments). (My medical) insurance reimburse most of the expense… more than 90% reimbursed. I only pay less than 10%.” - P5 .

“I pay for my own treatments… (I) don’t want him (his son) to spend his money. He’s not even married yet.” - P16 .

Some did not even quit working:

“I go back to work sometimes but they (superiors at work) don’t require me. Most of the time I work at home. Only some easy assignments… They pay me the minimal salary… I understand. It’s not easy for them either. Already very kind of them to keep me like this.” - P15 .

Theme 3: prioritization of cancer growth suppression over symptom management

Notably, when asked about their primary expectations with their current care, 15 out of 16 participants expressed a desire for cancer growth suppression. This included all 8 asymptomatic participants and 4 of the mildly symptomatic patients:

“I’ll take the PD-1 treatment (a targeted therapy) if my gene sequencing can find some new biomarker.” - P6 .

“… to control its (tumor) growth. I don’t know how much longer… There might be a new drug or treatment. Who knows.” (Laughed) - P7 .

Only 4 symptomatic participants mentioned alleviating their symptoms:

“My shoulder hurt really badly… After the ascites extraction, it didn’t hurt any more. It came back later and was relieved again after ascites extraction. Now it hurts a little some times but OK.” - P1 .

Theme 4: financial concerns

During the interviews, all participants mentioned financial concerns or burdens at some point, in some cases without any prompting from the interviewer. This was frequently associated with their decision to discontinue their current treatment. Notably, “running out of money” was identified as the primary reason for discontinuing treatment, which was emphasized more strongly than “not respond to therapy”:

“I’ll go on with the therapies as long as (I) have money… My son told me just to keep getting treated. He borrowed 8,000 Yuan when (he) came back from Shanghai. But I don’t want him to borrow money… I don’t want to become a burden (for my family). (I) just stop my treatment when I run out of money.” - P4 .

“… I’ll go on (with the treatment) as long as I can. Have to discontinue if no more money. What else can I do?” - P6 .

The availability of medical insurance reimbursement played a critical role in enabling them to afford ongoing treatment:

“The disease is a heavy burden. I can still afford it now. My medical insurance reimburses most of it but still a heavy burden. I’ll just discontinue therapy when run out of money.” - P2 .

Theme 5: hope for prognosis and life

Despite being aware of their diagnoses, the participants demonstrated a sense of hope for the prognosis of their treatments and their future prospects in life:

“I have no regret in life. My only unfinished business is to see my son getting married. I want to live to see it.” - P1 .

“The targeted therapy worked very well for me. I’m still taking it. Hopefully, it will last long.” - P9 .

Instead of giving up, they tended to seek new potential treatments if a particular therapy had failed:

“The doctor told me to take gene sequencing and see if some new biomarkers can be found after I stopped responding to the last medicine. I did and am waiting for the results now. (I) hope they can find a new one… Is there any other treatment I can use?” - P2 .

“… (the tumor) grew and spread again after my last surgery. The doctor said that more surgeries may not do any more good but there are still other possibilities, like targeted therapy.” - P7 .

Interestingly, none of the participants brought up topics such as the desire for dying with dignity or the consideration of a Do-Not-Resuscitate (DNR) agreement.

Theme 6: reluctance to discuss death and after-death arrangements

Two specific questions were incorporated into the interviews to inquire whether participants had contemplated their own death and discussed after-death arrangements with their families. The responses were varied. Nearly half of the participants (7/16) reported that they had either never or rarely thought about death, nor had they discussed after-death arrangements with their family members:

“I have never thought about it (death). Don’t want to… still a little afraid to talk about it.” - P5 .

“It crosses my mind sometimes but I don’t think about it… (I) have never discussed (the after-death arrangements) with them (family). It’s not time yet.” - P8 .

In contrast, some other participants seemed open to think about and discuss them:

“I did. That’s fine. I know I have it (cancer). They know I have it too. There’s no need to hide or fear. It’s pointless. Doesn’t help with anything. I talked about it (my death) with them (my family) once. They were kinda shy and almost cried. Then I stopped.” (Laughed) - P12 .

“(I) discussed my after-death arrangements with my family already. Better to get prepared earlier. No one knows when the time will come.” - P13 .

Theme 7: use of complementary and alternative medicine and religious coping

Seven participants reported utilizing complementary and alternative medicine (CAM) modalities, which were primarily limited to Chinese herbal medicine, acupuncture, and massage. The main reasons for use of CAM were to assist in suppressing tumor growth and alleviating symptoms:

“I took Chinese herbal medicine after chemotherapy to help with my nausea and vomiting. I also had acupuncture for my headache.” - P2 .

“I went to see a traditional Chinese medicine doctor. He was famous for treating cancer with herbal medicine.” - P9 .

An interesting observation was that two participants cited engaging in religious activities as part of their coping strategies. Notably, one of them adopted her religious practices shortly after receiving her cancer diagnosis:

“I began to believing in Christianity two years again… one month after I was diagnosed. The sisters (fellow believers) said that they would pray for me to heal… I enjoy the peace and joy.” - P2 .

“Yes, I’m a Christian… I pray for my health and healing sometimes.” - P16 .

Main findings

On this qualitative study, we sought to explore the experiences and care needs of advanced cancer patients with good ECOG PS, a population that has not been extensively studied. Understanding their unique perspectives is vital for optimizing care and ensuring that the patients’ needs are met in the continuum of cancer care. We were able to extract seven overarching themes from the narratives of our in-depth interviews with 16 participants, including their symptoms, sense of independence, treatment priorities, financial concerns, hope, reluctance to discuss death, and use of complementary and alternative medicine.

In the current study, we found most of our participants either asymptomatic or mildly symptomatic. This is consistent with previous studies about the relationship between performance status, symptom burden, and disease stage. The ECOG PS is widely used and essential measure of the functional capacity of cancer patient, which is shown to correlate with clinical outcomes, treatment tolerance, and survival [ 11 ]. Patients with good ECOG PS generally have no or limited disease-related restrictions, despite the advanced cancer stage. According to Cormier et al., several factors may contribute to their contrast with the poor PS patients, such as better overall health, effective symptom management, and more favorable tumor characteristics or response to treatment [ 12 ]. This practically differentiates the two sub-groups of advanced cancer patients not only in terms of their experiences of symptoms but their distinct care needs. Compared with their counterparts with poor PS, the better performing patients need less symptom management and psychological support and may have different care priorities, which echoes with our finding that the participants prioritized tumor suppression therapies over symptom management. It is important for care-providers to recognize the variability in symptom burden due to varied ECOG PS, monitor the symptom trajectory of a patient, and devise care strategies accordingly.

The second theme highlights the participants’ strong sense of independence in various aspects of their cancer journey, including self-care, care-related decision-making, and financial capacity. Their good ECOG PS may enable them to maintain functional autonomy and actively engage in daily activities and decision-making processes [ 11 ], who are either fully or partially self-sufficient in managing their daily living activities. This finding is significant as advanced cancer patients with good PS may require less assistance from family members and other informal caregivers. This autonomy in self-care can contribute to their overall quality of life and psychological well-being because maintaining independence is often considered essential in coping with cancer [ 13 ]. The participants’ resoluteness in making their own decisions while seeking input from various sources demonstrates their active engagement in their care process, which may lead to better treatment outcomes and satisfaction with care, as patients who participate in their care decisions often report feeling more empowered and in control of their lives [ 14 ]. It is vital for healthcare professionals to respect and support the patients’ autonomy by providing the necessary information and guidance for them to make informed choices about care [ 15 ]. Another aspect of independence was their financial capacity. According to Lentz and colleagues, having the financial resources to pay for care can alleviate some of the stress and burden associated with managing cancer and its treatments [ 16 ], which can further contribute to a patient’s sense of control and well-being during their care journey.

It is worth noting, however, that the participants in this study may not be representative of the broader population of advanced cancer patients because they were all medically insured, which covered a significant portion of their medical expenses. This reduced their out-of-pocket costs significantly, contributing to their sense of financial independence. The potential selection bias in our sample should be considered when interpreting our findings. The experiences of participants with medical insurance might not accurately reflect those without such coverage. Uninsured or under-insured patients may face substantial financial burden and stress relating to the costs of care [ 16 ]. Furthermore, financial ability to pay for care can play a crucial role in a patient’s decision-making, particularly when it comes to deciding whether to continue or discontinue treatment. Patients who are financially constrained may be more likely to consider discontinuing treatment, even if they are clinically eligible for and may benefit from the treatment [ 16 ], which was evident in our study. The financial burden of cancer treatment can lead to significant distress, prompting patients to weigh the benefits of treatment against the costs [ 17 ]. This may result in decisions not entirely aligned with their medical needs and preferences and potentially compromise their quality of care and clinical outcomes [ 18 ]. It is imperative that healthcare professionals should be attentive to a patient’s financial concerns, even when they perform well physically, and engage in open discussions about the costs of care and potential resources to support their decision-making.

The finding that advanced cancer patients with good ECOG PS prioritize cancer suppression therapies over symptom management was expectable. This preference can be easily understood according to Maslow’s hierarchy of needs where one would strive to fulfill their basic needs before addressing higher-order needs [ 19 ]. In our context, symptom management can be considered a basic need, as it addresses a patient’s physiological and safety concerns. Once the basic need is met, patients tend to shift their focus to higher-order needs, such as achieving the best possible cancer control and prolonging survival. In our case, the participants with good ECOG PS are mostly asymptomatic or mildly symptomatic. Their basic needs in terms of symptom management are relatively well-addressed. Therefore, they are more likely to prioritize such higher-order needs as cancer suppression for better clinical outcomes and maintain their functional status. This finding has significant implications for improving the prognosis of advanced cancer patients with good ECOG PS, who are generally more functional and experience fewer severe symptoms and as a result may be physically more tolerant to therapies, including aggressive or experimental treatments. This increased tolerance can enable clinicians to consider a broader range of treatment options, which may lead to better cancer control and improved their clinical outcomes, including better symptom management and prolonged survival. Additionally, these patients seem more driven to explore new and experimental treatment options. Their willingness to participate in clinical trials or seek innovative therapies may provide them with access to cutting-edge treatments with potentially benefits for their prognosis and survival [ 20 ]. As healthcare professionals, we should recognize this motivation and support them by providing information on clinical trials or innovative therapies.

Hope is known to have significant implications for advanced cancer patients, which may influences their emotional well-being, treatment decisions, and overall quality of life [ 21 , 22 , 23 , 24 ]. We found that the patients with good ECOG PS demonstrate hope for their prognosis and future prospects of life. Though being hopeful is generally beneficial for advanced cancer patients and may reinforce patient’s motivation to seek care positively, it must be noted that it can sometimes lead to unrealistic expectations or misguided decision-making [ 25 ]. This is particularly relevant in advanced cancer patients with good ECOG PS because their hopefulness and desire for aggressive treatment may lead them to misjudge their physical status and pursue therapies with limited efficacy or significant side effects [ 26 , 27 ]. It becomes crucial for healthcare professionals to be aware of this potential pitfall and ensure that patients are properly informed about their prognosis, treatment options, and potential risks and benefits.

It was noteworthy that none of our participants brought up such topics as the desire for dying with dignity or the consideration of a DNR agreement. Their relatively better quality of life and sense of hopefulness could make them more focused on treatment and improving prognosis, rather than considering end-of-life decisions [ 23 , 24 ]. Besides fear for death, another possible attributing factor is culture. Death and after-death arrangements are commonly thought of as negative topics or even taboos in Chinese culture, which are usually avoided especially when an individual is still living [ 28 ]. This resonates with Theme 6 where many participants were found reluctant to contemplate their own death and discuss after-death arrangements with their families. Their needs to be prepared for death, seek dignity in passing, and make arrangements after their deaths are expected to increase as they near the end of life [ 29 ]. Healthcare professionals should monitor their disease progression closely and offer support when needed.

Almost half of our participants (7/16) reported using CAM modalities, which were primarily limited to Chinese herbal medicine, acupuncture, and massage. The main reasons for employing CAM were to aid in suppressing tumor growth and alleviating symptoms. This finding highlights the diverse approaches that patients may take in searching for effective treatments, particularly where conventional therapies have limited efficacy or are associated with substantial side effects [ 11 ]. The limited diversity of CAM modalities suggests that the patients may lack awareness or accessibility to a broader array of CAM options, which is consistent with previous reports [ 30 , 31 ]. Furthermore, despite the clinical trials to investigate the safety and efficacy of Chinese herbal medicine as a complement to mainstream cancer treatments, there is still insufficient evidence to establish CAM modalities for suppressing tumor growth. As a result, use of CAM should be approached with caution and mainly considered for purposes other than tumor treatment.

It is intriguing to find that two of the participants engaged in religious activities as part of their coping strategies because Chinese people are often believed to have a lower prevalence of religious beliefs and studies investigating religious coping in the Chinese population are scarce [ 32 ]. A main impression of the two religious patients was that they seemed to use religion for practical purposes, rather than fully embracing the beliefs. This is consistent with previous studies where cancer patients may seek out religious practices as a way to manage stress, find peace, and maintain a sense of hope during difficult times. Praying for healing, for example, can provide a sense of control and agency in a situation where they may feel powerless [ 33 ]. Future research may continue to pursue the subject among Chinese cancer patients.

Compared with dying advanced cancer patients with poor ECOG PS, those with good ECOG PS display distinct experiences and care needs. They generally have milder symptoms, higher independence in self-care, decision-making, and financial capacity, and prioritize tumor suppression therapies over symptom management. On the other hand, patients with poor ECOG PS grapple with a higher symptom burden, increased reliance on support, and a focus on symptom relief and palliative care. Though sharing concerns about finances, demonstrating hopefulness, utilizing CAM, the two groups have varying degrees and objectives. Recognizing these distinctions is essential for healthcare professionals to provide customized, patient-centered care to address the unique needs of the well-performing cancer patients.

Strengths and limitations

As one of the few qualitative investigations to explore the experiences and care needs of advanced cancer patients with good ECOG PS, our study revealed that this patient group is distinct from their dying counterparts, who are the focus of the current research literature. Our findings highlight some observations characteristic of the patient group such as their asymptomatic or mildly symptomatic experiences, stronger sense of independence in various perspectives, and distinct care prioritization from those nearing death. However, further quantitative studies are needed to determine the association and synergistic dynamics of such characteristics.

Implications for practice

It is vital for healthcare professionals and policy-makers to recognize these unique experiences and care needs of advanced cancer patients with good ECOG PS and respond by providing necessary information, education, treatment options, and care strategies.

Data availability

Due to the sensitive nature of the interview recordings, the original audio recordings are prohibited from sharing. The desensitized transcripts and demographic data are available from the corresponding author on reasonable request.

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Acknowledgements

The authors would like to thank the Cancer Psychology and Health Management Committee of Sichuan Cancer Society (S.C.S.) for their exceptional guidance.

This work was supported by Medical Research Project of Sichuan Medical Association (S20061) and the Joint Research Fund of Chengdu Medical College-Chengdu Seventh People’s Hospital (2020LHJYZD-03). The funders had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; and decision to submit the manuscript for publication.

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Ping Chen and Mingfu Ding contributed equally to this work.

Authors and Affiliations

Abdominal Oncology Ward, Division of Medical Oncology, Cancer Center, West China Hospital, Sichuan University, No. 37 Guoxue Alley, Wuhou District, Chengdu, 610041, Sichuan Province, China

Ping Chen & Cheng Yi

Rehabilitation Medicine Department, West China Hospital, Sichuan University, No. 37 Guoxue Alley, Wuhou District, Chengdu, 610041, Sichuan Province, China

Mingfu Ding

Department of Oncology, Chengdu Seventh People’s Hospital (Affiliated Cancer Hospital of Chengdu Medical College), No. 1 Shi’er Zhong Street, Wuhou District, Chengdu, 610041, Sichuan Province, China

Ping Chen, Changlin Li, Li Ma & Taiguo Liu

Department of Intensive Care Unit, Chengdu Seventh People’s Hospital (Affiliated Cancer Hospital of Chengdu Medical College), No. 1 Shi’er Zhong Street, Wuhou District, Chengdu, 610041, Sichuan Province, China

Yujuan Long

Department of Medical Oncology, Guangxi Academy of Medical Sciences and the People’s Hospital of Guangxi Zhuang Autonomous Region, Nanning, 530016, Guangxi, China

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Contributions

PC is the primary investigator and conducted the interviews. PC, MD, TL, and CY conceptualised and designed this study. PC, CL, and YL processed the data and verified accuracy of data against the transcripts. PC, MD, CL, YL, DP, LM, TL, and CY analyzed the data and interpreted the findings. PC, TL, and CY wrote the initial draft. MD, CL, and YL provided critical feedback about the draft. All authors reviewed and approved the final manuscript for submission.

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Correspondence to Taiguo Liu or Cheng Yi .

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This study was performed according to the appropriate Chinese laws and regulations, the principles outlined in the Declaration of Helsinki, and Good Clinical Practice guidelines. The study was ethically approved by the Ethics Committee of Chengdu Seventh People’s Hospital (reference number AF-SOP-09-2.1). Written informed consents were signed with all participants.

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Chen, P., Ding, M., Li, C. et al. Distinct experiences and care needs of advanced cancer patients with good ECOG performance status: a qualitative phenomenological study. BMC Palliat Care 23 , 102 (2024). https://doi.org/10.1186/s12904-024-01425-3

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Presenting and Evaluating Qualitative Research

The purpose of this paper is to help authors to think about ways to present qualitative research papers in the American Journal of Pharmaceutical Education . It also discusses methods for reviewers to assess the rigour, quality, and usefulness of qualitative research. Examples of different ways to present data from interviews, observations, and focus groups are included. The paper concludes with guidance for publishing qualitative research and a checklist for authors and reviewers.

INTRODUCTION

Policy and practice decisions, including those in education, increasingly are informed by findings from qualitative as well as quantitative research. Qualitative research is useful to policymakers because it often describes the settings in which policies will be implemented. Qualitative research is also useful to both pharmacy practitioners and pharmacy academics who are involved in researching educational issues in both universities and practice and in developing teaching and learning.

Qualitative research involves the collection, analysis, and interpretation of data that are not easily reduced to numbers. These data relate to the social world and the concepts and behaviors of people within it. Qualitative research can be found in all social sciences and in the applied fields that derive from them, for example, research in health services, nursing, and pharmacy. 1 It looks at X in terms of how X varies in different circumstances rather than how big is X or how many Xs are there? 2 Textbooks often subdivide research into qualitative and quantitative approaches, furthering the common assumption that there are fundamental differences between the 2 approaches. With pharmacy educators who have been trained in the natural and clinical sciences, there is often a tendency to embrace quantitative research, perhaps due to familiarity. A growing consensus is emerging that sees both qualitative and quantitative approaches as useful to answering research questions and understanding the world. Increasingly mixed methods research is being carried out where the researcher explicitly combines the quantitative and qualitative aspects of the study. 3 , 4

Like healthcare, education involves complex human interactions that can rarely be studied or explained in simple terms. Complex educational situations demand complex understanding; thus, the scope of educational research can be extended by the use of qualitative methods. Qualitative research can sometimes provide a better understanding of the nature of educational problems and thus add to insights into teaching and learning in a number of contexts. For example, at the University of Nottingham, we conducted in-depth interviews with pharmacists to determine their perceptions of continuing professional development and who had influenced their learning. We also have used a case study approach using observation of practice and in-depth interviews to explore physiotherapists' views of influences on their leaning in practice. We have conducted in-depth interviews with a variety of stakeholders in Malawi, Africa, to explore the issues surrounding pharmacy academic capacity building. A colleague has interviewed and conducted focus groups with students to explore cultural issues as part of a joint Nottingham-Malaysia pharmacy degree program. Another colleague has interviewed pharmacists and patients regarding their expectations before and after clinic appointments and then observed pharmacist-patient communication in clinics and assessed it using the Calgary Cambridge model in order to develop recommendations for communication skills training. 5 We have also performed documentary analysis on curriculum data to compare pharmacist and nurse supplementary prescribing courses in the United Kingdom.

It is important to choose the most appropriate methods for what is being investigated. Qualitative research is not appropriate to answer every research question and researchers need to think carefully about their objectives. Do they wish to study a particular phenomenon in depth (eg, students' perceptions of studying in a different culture)? Or are they more interested in making standardized comparisons and accounting for variance (eg, examining differences in examination grades after changing the way the content of a module is taught). Clearly a quantitative approach would be more appropriate in the last example. As with any research project, a clear research objective has to be identified to know which methods should be applied.

Types of qualitative data include:

• Audio recordings and transcripts from in-depth or semi-structured interviews
• Structured interview questionnaires containing substantial open comments including a substantial number of responses to open comment items.
• Audio recordings and transcripts from focus group sessions.
• Field notes (notes taken by the researcher while in the field [setting] being studied)
• Video recordings (eg, lecture delivery, class assignments, laboratory performance)
• Case study notes
• Documents (reports, meeting minutes, e-mails)
• Diaries, video diaries
• Observation notes
• Press clippings
• Photographs

RIGOUR IN QUALITATIVE RESEARCH

Qualitative research is often criticized as biased, small scale, anecdotal, and/or lacking rigor; however, when it is carried out properly it is unbiased, in depth, valid, reliable, credible and rigorous. In qualitative research, there needs to be a way of assessing the “extent to which claims are supported by convincing evidence.” 1 Although the terms reliability and validity traditionally have been associated with quantitative research, increasingly they are being seen as important concepts in qualitative research as well. Examining the data for reliability and validity assesses both the objectivity and credibility of the research. Validity relates to the honesty and genuineness of the research data, while reliability relates to the reproducibility and stability of the data.

The validity of research findings refers to the extent to which the findings are an accurate representation of the phenomena they are intended to represent. The reliability of a study refers to the reproducibility of the findings. Validity can be substantiated by a number of techniques including triangulation use of contradictory evidence, respondent validation, and constant comparison. Triangulation is using 2 or more methods to study the same phenomenon. Contradictory evidence, often known as deviant cases, must be sought out, examined, and accounted for in the analysis to ensure that researcher bias does not interfere with or alter their perception of the data and any insights offered. Respondent validation, which is allowing participants to read through the data and analyses and provide feedback on the researchers' interpretations of their responses, provides researchers with a method of checking for inconsistencies, challenges the researchers' assumptions, and provides them with an opportunity to re-analyze their data. The use of constant comparison means that one piece of data (for example, an interview) is compared with previous data and not considered on its own, enabling researchers to treat the data as a whole rather than fragmenting it. Constant comparison also enables the researcher to identify emerging/unanticipated themes within the research project.

STRENGTHS AND LIMITATIONS OF QUALITATIVE RESEARCH

Qualitative researchers have been criticized for overusing interviews and focus groups at the expense of other methods such as ethnography, observation, documentary analysis, case studies, and conversational analysis. Qualitative research has numerous strengths when properly conducted.

Strengths of Qualitative Research

• Issues can be examined in detail and in depth.
• Interviews are not restricted to specific questions and can be guided/redirected by the researcher in real time.
• The research framework and direction can be quickly revised as new information emerges.
• The data based on human experience that is obtained is powerful and sometimes more compelling than quantitative data.
• Subtleties and complexities about the research subjects and/or topic are discovered that are often missed by more positivistic enquiries.
• Data usually are collected from a few cases or individuals so findings cannot be generalized to a larger population. Findings can however be transferable to another setting.

Limitations of Qualitative Research

• Research quality is heavily dependent on the individual skills of the researcher and more easily influenced by the researcher's personal biases and idiosyncrasies.
• Rigor is more difficult to maintain, assess, and demonstrate.
• The volume of data makes analysis and interpretation time consuming.
• It is sometimes not as well understood and accepted as quantitative research within the scientific community
• The researcher's presence during data gathering, which is often unavoidable in qualitative research, can affect the subjects' responses.
• Issues of anonymity and confidentiality can present problems when presenting findings
• Findings can be more difficult and time consuming to characterize in a visual way.

PRESENTATION OF QUALITATIVE RESEARCH FINDINGS

The following extracts are examples of how qualitative data might be presented:

Data From an Interview.

The following is an example of how to present and discuss a quote from an interview.

The researcher should select quotes that are poignant and/or most representative of the research findings. Including large portions of an interview in a research paper is not necessary and often tedious for the reader. The setting and speakers should be established in the text at the end of the quote.

The student describes how he had used deep learning in a dispensing module. He was able to draw on learning from a previous module, “I found that while using the e learning programme I was able to apply the knowledge and skills that I had gained in last year's diseases and goals of treatment module.” (interviewee 22, male)

This is an excerpt from an article on curriculum reform that used interviews 5 :

The first question was, “Without the accreditation mandate, how much of this curriculum reform would have been attempted?” According to respondents, accreditation played a significant role in prompting the broad-based curricular change, and their comments revealed a nuanced view. Most indicated that the change would likely have occurred even without the mandate from the accreditation process: “It reflects where the profession wants to be … training a professional who wants to take on more responsibility.” However, they also commented that “if it were not mandated, it could have been a very difficult road.” Or it “would have happened, but much later.” The change would more likely have been incremental, “evolutionary,” or far more limited in its scope. “Accreditation tipped the balance” was the way one person phrased it. “Nobody got serious until the accrediting body said it would no longer accredit programs that did not change.”

Data From Observations

The following example is some data taken from observation of pharmacist patient consultations using the Calgary Cambridge guide. 6 , 7 The data are first presented and a discussion follows:

Pharmacist: We will soon be starting a stop smoking clinic. Patient: Is the interview over now? Pharmacist: No this is part of it. (Laughs) You can't tell me to bog off (sic) yet. (pause) We will be starting a stop smoking service here, Patient: Yes. Pharmacist: with one-to-one and we will be able to help you or try to help you. If you want it. In this example, the pharmacist has picked up from the patient's reaction to the stop smoking clinic that she is not receptive to advice about giving up smoking at this time; in fact she would rather end the consultation. The pharmacist draws on his prior relationship with the patient and makes use of a joke to lighten the tone. He feels his message is important enough to persevere but he presents the information in a succinct and non-pressurised way. His final comment of “If you want it” is important as this makes it clear that he is not putting any pressure on the patient to take up this offer. This extract shows that some patient cues were picked up, and appropriately dealt with, but this was not the case in all examples.

Data From Focus Groups

This excerpt from a study involving 11 focus groups illustrates how findings are presented using representative quotes from focus group participants. 8

Those pharmacists who were initially familiar with CPD endorsed the model for their peers, and suggested it had made a meaningful difference in the way they viewed their own practice. In virtually all focus groups sessions, pharmacists familiar with and supportive of the CPD paradigm had worked in collaborative practice environments such as hospital pharmacy practice. For these pharmacists, the major advantage of CPD was the linking of workplace learning with continuous education. One pharmacist stated, “It's amazing how much I have to learn every day, when I work as a pharmacist. With [the learning portfolio] it helps to show how much learning we all do, every day. It's kind of satisfying to look it over and see how much you accomplish.” Within many of the learning portfolio-sharing sessions, debates emerged regarding the true value of traditional continuing education and its outcome in changing an individual's practice. While participants appreciated the opportunity for social and professional networking inherent in some forms of traditional CE, most eventually conceded that the academic value of most CE programming was limited by the lack of a systematic process for following-up and implementing new learning in the workplace. “Well it's nice to go to these [continuing education] events, but really, I don't know how useful they are. You go, you sit, you listen, but then, well I at least forget.”

The following is an extract from a focus group (conducted by the author) with first-year pharmacy students about community placements. It illustrates how focus groups provide a chance for participants to discuss issues on which they might disagree.

Interviewer: So you are saying that you would prefer health related placements? Student 1: Not exactly so long as I could be developing my communication skill. Student 2: Yes but I still think the more health related the placement is the more I'll gain from it. Student 3: I disagree because other people related skills are useful and you may learn those from taking part in a community project like building a garden. Interviewer: So would you prefer a mixture of health and non health related community placements?

GUIDANCE FOR PUBLISHING QUALITATIVE RESEARCH

Qualitative research is becoming increasingly accepted and published in pharmacy and medical journals. Some journals and publishers have guidelines for presenting qualitative research, for example, the British Medical Journal 9 and Biomedcentral . 10 Medical Education published a useful series of articles on qualitative research. 11 Some of the important issues that should be considered by authors, reviewers and editors when publishing qualitative research are discussed below.

Introduction.

A good introduction provides a brief overview of the manuscript, including the research question and a statement justifying the research question and the reasons for using qualitative research methods. This section also should provide background information, including relevant literature from pharmacy, medicine, and other health professions, as well as literature from the field of education that addresses similar issues. Any specific educational or research terminology used in the manuscript should be defined in the introduction.

The methods section should clearly state and justify why the particular method, for example, face to face semistructured interviews, was chosen. The method should be outlined and illustrated with examples such as the interview questions, focusing exercises, observation criteria, etc. The criteria for selecting the study participants should then be explained and justified. The way in which the participants were recruited and by whom also must be stated. A brief explanation/description should be included of those who were invited to participate but chose not to. It is important to consider “fair dealing,” ie, whether the research design explicitly incorporates a wide range of different perspectives so that the viewpoint of 1 group is never presented as if it represents the sole truth about any situation. The process by which ethical and or research/institutional governance approval was obtained should be described and cited.

The study sample and the research setting should be described. Sampling differs between qualitative and quantitative studies. In quantitative survey studies, it is important to select probability samples so that statistics can be used to provide generalizations to the population from which the sample was drawn. Qualitative research necessitates having a small sample because of the detailed and intensive work required for the study. So sample sizes are not calculated using mathematical rules and probability statistics are not applied. Instead qualitative researchers should describe their sample in terms of characteristics and relevance to the wider population. Purposive sampling is common in qualitative research. Particular individuals are chosen with characteristics relevant to the study who are thought will be most informative. Purposive sampling also may be used to produce maximum variation within a sample. Participants being chosen based for example, on year of study, gender, place of work, etc. Representative samples also may be used, for example, 20 students from each of 6 schools of pharmacy. Convenience samples involve the researcher choosing those who are either most accessible or most willing to take part. This may be fine for exploratory studies; however, this form of sampling may be biased and unrepresentative of the population in question. Theoretical sampling uses insights gained from previous research to inform sample selection for a new study. The method for gaining informed consent from the participants should be described, as well as how anonymity and confidentiality of subjects were guaranteed. The method of recording, eg, audio or video recording, should be noted, along with procedures used for transcribing the data.

Data Analysis.

A description of how the data were analyzed also should be included. Was computer-aided qualitative data analysis software such as NVivo (QSR International, Cambridge, MA) used? Arrival at “data saturation” or the end of data collection should then be described and justified. A good rule when considering how much information to include is that readers should have been given enough information to be able to carry out similar research themselves.

One of the strengths of qualitative research is the recognition that data must always be understood in relation to the context of their production. 1 The analytical approach taken should be described in detail and theoretically justified in light of the research question. If the analysis was repeated by more than 1 researcher to ensure reliability or trustworthiness, this should be stated and methods of resolving any disagreements clearly described. Some researchers ask participants to check the data. If this was done, it should be fully discussed in the paper.

An adequate account of how the findings were produced should be included A description of how the themes and concepts were derived from the data also should be included. Was an inductive or deductive process used? The analysis should not be limited to just those issues that the researcher thinks are important, anticipated themes, but also consider issues that participants raised, ie, emergent themes. Qualitative researchers must be open regarding the data analysis and provide evidence of their thinking, for example, were alternative explanations for the data considered and dismissed, and if so, why were they dismissed? It also is important to present outlying or negative/deviant cases that did not fit with the central interpretation.

The interpretation should usually be grounded in interviewees or respondents' contributions and may be semi-quantified, if this is possible or appropriate, for example, “Half of the respondents said …” “The majority said …” “Three said…” Readers should be presented with data that enable them to “see what the researcher is talking about.” 1 Sufficient data should be presented to allow the reader to clearly see the relationship between the data and the interpretation of the data. Qualitative data conventionally are presented by using illustrative quotes. Quotes are “raw data” and should be compiled and analyzed, not just listed. There should be an explanation of how the quotes were chosen and how they are labeled. For example, have pseudonyms been given to each respondent or are the respondents identified using codes, and if so, how? It is important for the reader to be able to see that a range of participants have contributed to the data and that not all the quotes are drawn from 1 or 2 individuals. There is a tendency for authors to overuse quotes and for papers to be dominated by a series of long quotes with little analysis or discussion. This should be avoided.

Participants do not always state the truth and may say what they think the interviewer wishes to hear. A good qualitative researcher should not only examine what people say but also consider how they structured their responses and how they talked about the subject being discussed, for example, the person's emotions, tone, nonverbal communication, etc. If the research was triangulated with other qualitative or quantitative data, this should be discussed.

Discussion.

The findings should be presented in the context of any similar previous research and or theories. A discussion of the existing literature and how this present research contributes to the area should be included. A consideration must also be made about how transferrable the research would be to other settings. Any particular strengths and limitations of the research also should be discussed. It is common practice to include some discussion within the results section of qualitative research and follow with a concluding discussion.

The author also should reflect on their own influence on the data, including a consideration of how the researcher(s) may have introduced bias to the results. The researcher should critically examine their own influence on the design and development of the research, as well as on data collection and interpretation of the data, eg, were they an experienced teacher who researched teaching methods? If so, they should discuss how this might have influenced their interpretation of the results.

Conclusion.

The conclusion should summarize the main findings from the study and emphasize what the study adds to knowledge in the area being studied. Mays and Pope suggest the researcher ask the following 3 questions to determine whether the conclusions of a qualitative study are valid 12 : How well does this analysis explain why people behave in the way they do? How comprehensible would this explanation be to a thoughtful participant in the setting? How well does the explanation cohere with what we already know?

CHECKLIST FOR QUALITATIVE PAPERS

This paper establishes criteria for judging the quality of qualitative research. It provides guidance for authors and reviewers to prepare and review qualitative research papers for the American Journal of Pharmaceutical Education . A checklist is provided in Appendix 1 to assist both authors and reviewers of qualitative data.

ACKNOWLEDGEMENTS

Thank you to the 3 reviewers whose ideas helped me to shape this paper.

Appendix 1. Checklist for authors and reviewers of qualitative research.

Introduction

• □ Research question is clearly stated.
• □ Research question is justified and related to the existing knowledge base (empirical research, theory, policy).
• □ Any specific research or educational terminology used later in manuscript is defined.
• □ The process by which ethical and or research/institutional governance approval was obtained is described and cited.
• □ Reason for choosing particular research method is stated.
• □ Criteria for selecting study participants are explained and justified.
• □ Recruitment methods are explicitly stated.
• □ Details of who chose not to participate and why are given.
• □ Study sample and research setting used are described.
• □ Method for gaining informed consent from the participants is described.
• □ Maintenance/Preservation of subject anonymity and confidentiality is described.
• □ Method of recording data (eg, audio or video recording) and procedures for transcribing data are described.
• □ Methods are outlined and examples given (eg, interview guide).
• □ Decision to stop data collection is described and justified.
• □ Data analysis and verification are described, including by whom they were performed.
• □ Methods for identifying/extrapolating themes and concepts from the data are discussed.
• □ Sufficient data are presented to allow a reader to assess whether or not the interpretation is supported by the data.
• □ Outlying or negative/deviant cases that do not fit with the central interpretation are presented.
• □ Transferability of research findings to other settings is discussed.
• □ Findings are presented in the context of any similar previous research and social theories.
• □ Discussion often is incorporated into the results in qualitative papers.
• □ A discussion of the existing literature and how this present research contributes to the area is included.
• □ Any particular strengths and limitations of the research are discussed.
• □ Reflection of the influence of the researcher(s) on the data, including a consideration of how the researcher(s) may have introduced bias to the results is included.

Conclusions

• □ The conclusion states the main finings of the study and emphasizes what the study adds to knowledge in the subject area.

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About 1 in 5 U.S. teens who’ve heard of ChatGPT have used it for schoolwork

Roughly one-in-five teenagers who have heard of ChatGPT say they have used it to help them do their schoolwork, according to a new Pew Research Center survey of U.S. teens ages 13 to 17. With a majority of teens having heard of ChatGPT, that amounts to 13% of all U.S. teens who have used the generative artificial intelligence (AI) chatbot in their schoolwork.

Teens in higher grade levels are particularly likely to have used the chatbot to help them with schoolwork. About one-quarter of 11th and 12th graders who have heard of ChatGPT say they have done this. This share drops to 17% among 9th and 10th graders and 12% among 7th and 8th graders.

There is no significant difference between teen boys and girls who have used ChatGPT in this way.

The introduction of ChatGPT last year has led to much discussion about its role in schools , especially whether schools should integrate the new technology into the classroom or ban it .

Pew Research Center conducted this analysis to understand American teens’ use and understanding of ChatGPT in the school setting.

The Center conducted an online survey of 1,453 U.S. teens from Sept. 26 to Oct. 23, 2023, via Ipsos. Ipsos recruited the teens via their parents, who were part of its KnowledgePanel . The KnowledgePanel is a probability-based web panel recruited primarily through national, random sampling of residential addresses. The survey was weighted to be representative of U.S. teens ages 13 to 17 who live with their parents by age, gender, race and ethnicity, household income, and other categories.

This research was reviewed and approved by an external institutional review board (IRB), Advarra, an independent committee of experts specializing in helping to protect the rights of research participants.

Here are the  questions used for this analysis , along with responses, and its  methodology .

Teens’ awareness of ChatGPT

Overall, two-thirds of U.S. teens say they have heard of ChatGPT, including 23% who have heard a lot about it. But awareness varies by race and ethnicity, as well as by household income:

• 72% of White teens say they’ve heard at least a little about ChatGPT, compared with 63% of Hispanic teens and 56% of Black teens.
• 75% of teens living in households that make $75,000 or more annually have heard of ChatGPT. Much smaller shares in households with incomes between $30,000 and $74,999 (58%) and less than $30,000 (41%) say the same.

Teens who are more aware of ChatGPT are more likely to use it for schoolwork. Roughly a third of teens who have heard a lot about ChatGPT (36%) have used it for schoolwork, far higher than the 10% among those who have heard a little about it.

When do teens think it’s OK for students to use ChatGPT?

For teens, whether it is – or is not – acceptable for students to use ChatGPT depends on what it is being used for.

There is a fair amount of support for using the chatbot to explore a topic. Roughly seven-in-ten teens who have heard of ChatGPT say it’s acceptable to use when they are researching something new, while 13% say it is not acceptable.

However, there is much less support for using ChatGPT to do the work itself. Just one-in-five teens who have heard of ChatGPT say it’s acceptable to use it to write essays, while 57% say it is not acceptable. And 39% say it’s acceptable to use ChatGPT to solve math problems, while a similar share of teens (36%) say it’s not acceptable.

Some teens are uncertain about whether it’s acceptable to use ChatGPT for these tasks. Between 18% and 24% say they aren’t sure whether these are acceptable use cases for ChatGPT.

Those who have heard a lot about ChatGPT are more likely than those who have only heard a little about it to say it’s acceptable to use the chatbot to research topics, solve math problems and write essays. For instance, 54% of teens who have heard a lot about ChatGPT say it’s acceptable to use it to solve math problems, compared with 32% among those who have heard a little about it.

Note: Here are the  questions used for this analysis , along with responses, and its  methodology .

• Artificial Intelligence
• Technology Adoption
• Teens & Tech

Many Americans think generative AI programs should credit the sources they rely on

Americans’ use of chatgpt is ticking up, but few trust its election information, q&a: how we used large language models to identify guests on popular podcasts, striking findings from 2023, what the data says about americans’ views of artificial intelligence, most popular.

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